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[null,null,null,null,null,"Home Page\n***\nSurvey Results\n"]

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["Activity sector","Country","Organisation","1. Questionnaires as tools for collecting health-related data should comply with certain qualitative criteria, in particular to avoid any potential resultant difficulties in interpreting questions and prevent disputes, and guarantee that the insurer collects only information relevant for underwriting. Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1]
["Patients","Europe","Autism-Europe",1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"Questionnaires drawn up by specialists to be used by customers must be clear and accessible, particularly for non-specialists.  Only relevant information should be collected."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"Most applicants do not understand either the point of questionnaires, which is that they give companies the chance to calculate the cost of insurance risks, or the importance of protecting insurance funds.  Consequently, they may tend not to provide all the information which is nonetheless necessary for the negotiation of the contract. Major efforts at explanation and communication must be made to avoid such situations.  Furthermore, very broad, open questions do not help to gain a better picture of insurance applicants. We are a consumer association, and our branches deal with many disputes arising from the poor quality of questionnaires – and, in particular, cases in which insurance companies refuse to pay out sums of money set out in the contract without first gaining the authorisation of the courts not to do so, although this is what French law requires, on the ground that the customer failed to declare his or her general state of health when taking out the insurance. Yet, consumers are not necessarily acting in bad faith in such cases; they simply fail to understand why the insurance company must have this information. \nA rule should therefore be established to ensure that these questionnaires meet certain quality standards."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,"The point is not just to determine what information is relevant to underwriting. There is also a need to ensure that the way in which the information is collected does not undermine fundamental rights."]
["Insurance","Netherlands","Achmea",1,null,"Tens of thousands of disorders are covered by the health questionnaires. The questionnaires need to have a very high sensitivity for this reason. The rest of the underwriting process guarantees a very high specificity."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"Tens of thousands of disorders are covered by the health questionnaires. The questionnaires need to have a very high sensitivity for this reason. The rest of the underwriting process guarantees a very high specificity."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Insurers have a vested interest in making sure that their customers are presented with questions that reasonably address the risk being insured.  There is no need for an external agency to second-guess either the content or the intent of such questions.  As no qualitative criteria are detailed here, the proposal of any criteria cannot be properly assessed as part of this question."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"Our industry has guidelines for design of underwriting questionnaires and these are based on considerable combined experience."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"Both supervisory authorities and the legal situation (Versicherungsvertragsgesetz) require a duty of disclosure of all risk relevant aspects and a risk commensurate calculation of the premium. This risk-based approach reflects the supervisory requirements at European level, confirmed and made more specific in Solvency II, particularly with regard to the requirements for insurance companies' risk management and the calculation rules for underwriting reserves. This is also relevant for checking the obligation to disclose pre-existing conditions in  claim-handling."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"The need for insurers to include objective, understandable and relevant questions is clear, and would benefit both the consumer and the insurer, as clear questions produce clear answers which require less need to go back for clarification.  Unfortunately, past efforts to address this at market level by producing lists of acceptable questions have proved unhelpful, as these invariably fail to address the different requirements of all sales channels or all products. It would be even more difficult to establish cross border lists of acceptable questions as these would fail to reflect local issues, products, standard exclusions and acceptable practice. The insurance industry is undergoing considerable change as our customers buy the products in ever more innovative ways, and questions designed solely with the traditional advised sale in mind are often unsuitable for these alternative channels or new products. Standardisation of products and questionnaires would also reduce choice for the consumer, i.e. many consumers are happy to answer a long series of questions so as to get the most accurate picture of their risk profile and subsequently a lower price, whilst others want fewer questions asked to speed up the sales process; to enforce one set of questions on all would result in the loss of this choice to the consumer. Some markets have developed best practice guidelines on application form question wording which encourage simplicity and objectivity which is to be welcomed."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"It is essential for the questionnaires to be of good quality. The questions must be clear and precise to prevent applicants from misunderstanding and insurers from misinterpreting their answers."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"Please see our response to 1.b."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",null,null,"There is no (dis-)agreement to this proposal. In Germany there are clear legal frameworks to handle this question: Extract of the Genetic Diagnosis Act - GenDG Section 4 Genetic Examinations in the Insurance Sector. \n§18 Genetic Examinations and Analyses in Conjunction with the Conclusion of an Insurance Contract \n(1) No insurer may either before or after the conclusion of an insurance contract with the insured 1. demand any genetic examinations or analyses be conducted, or 2. demand any results or data from any previously conducted genetic examinations or analyses or use or receive the results of any genetic examinations or analyses. In regard to life insurance, disability insurance, occupational disability insurance and pension insurance, Nr. 2 first sentence does not apply where a contract with a value exceeding EUR 300,000 or an annuity exceeding EUR 30,000 p.a. has been agreed to.\n(2) Illnesses and prior illnesses must be disclosed; to such extent, § 19 through § 22 and § 47 of the Insurance Agreement Act apply."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"Only data that is of high clinical standard and valid should be considered relevant for underwriting. Using data of low quality will increase the risk of incorrect decisions."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"Agree - but it may be difficult to decide which data is relevant, and all the relevant data should not always be demanded."]
["Universities","Hungary","Central European University, Budapest",1,null,"Preliminary testing of the questions were desirable (on a representative group of people); questions should not use technical (actuarial, medical language) and if possible should avoid multiple meanings; furthermore, an expert team (background in data protection, health, social science should co-operate in designing the question)."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"One of the underlying principles of insurance is that the information gathered must be relevant to the risk being covered. In the interests of fairness to the insurance applicant, and in accordance with fundamental human rights such as the right to private life, it is important that the questionnaire only ask questions that are relevant, and directly applicable to the applicant and the risk in question.  In accordance with the need to ensure against any interpretative difficulties, it is also important that any questions asked are clear and unambiguous and only relate to health information that is necessary as regards the current health status of the individual."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1,null,"The wording has to be very clear and easily understandable."]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","Greece","National Bioethics Commission",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"Strengthen the guarantees of the both parties if these criteria are not disproportionate regarding to private life."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"Under the Act of 6 January 1978 as amended by the transposition of Directive 95/46/EC, the information collected must be relevant and not excessive in view of the purpose of the process."]

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["Activity sector","Country","Organisation","1.a  Only objective questions should be included and open or subjective questions such as “do you consider yourself to be in good health?” should be avoided. Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",null,1,"Subjective questions should on the whole be avoided. The example given seems to be more a measure of the degree of optimisim and outlook on life than an indication of actual health status. However, there might be justifiable exceptions. Open questions should not necessarily be avoided. They do not necessarily lead to subjective responses and may result in more precise information compared to a closed question or multiple choice question for which none of the responses might accurately describe the applicant's personal situation/health."]
["Patients","Europe","Autism-Europe",1,null,"Answers to subjective questions may lead to provide unnecessary information as well as  to arbitrary and/or misleading interpretation."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"Open and subjective questions must be completely rejected. Experience shows that all too often open questions are a way out for insurance companies who wish to avoid paying out."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"Most insurance questionnaires contain questions such as “Do you consider yourself to be in good health?\" and \"Do you have health problems?\" It is impossible to answer such questions properly. For example, a customer suffering from a hearing impairment may consider that he is in good health compared to other people and hence answer yes, whereas this is a piece of information that he would have known that he had to pass on had he known enough about negotiating insurance contracts. Our association believes that such questions should not be simply avoided but should be prohibited (in order to protect the weaker partner in the contract, namely the applicant, and out of due regard for the duty of fidelity that applies to the parties to a contract). Since we argue that open questions should be prohibited, all questions should be closed. However, there should not be a general right to pose any closed question. Much work is needed to identify closed questions which should also be prohibited.  "]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"It is absolutely necessary to prohibit open-ended questions (DH-BIO/INF(2012)1, page 11, paras 45-46)."]
["Unions","Europe","Confédération Européenne des Syndicats",1]
["Insurance","Netherlands","Achmea",1,null,"To get a maximal contrast between risk factors and irrelevant medical information, “noise” should be avoided. Objective questions can reduce this “noise” and enhance “contrast”."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"To get a maximal contrast between risk factors and irrelevant medical information, “noise” should be avoided. Objective questions can reduce this “noise” and enhance “contrast”."]
["Insurance","Netherlands","Nationale Nederlanden/ING",null,1,"Self-image of the questionnee is important, especially for insurance for incapacity for work."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Subjective questions like this are found to be significant predictors of future health in many clinical and population studies. Insurers would be forced to forego a useful scientific tool that has been proven time and again in medical studies for no good reason. "]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"Our industry has guidelines for the design of underwriting questionnaires and these are based on considerable combined experience."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"The intention of the questionnaire is to obtain a comprehesive view of the risks which should be covered by the insurance policy. General questions lead to much \"noise\" that obscures the \"contrast\" between relevant risks and irrelevant medical information. Subjective self-assesment has some significance for risk evaluation, e.g. there are questions about complaints and symptoms (\"Beschwerden\") which concern subjective feelings and which are applied both by clinical and insurance medicine to some degree to detect a particular disease."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"Whilst we would agree with the principle, clearly the example question is a poor one, and should not be used to force the abandonment of all open questions, which can in some forms still be a valid form of risk management. Long lists of many diseases may be objective, but they can never be complete and insurance customers are no longer prepared to tolerate long forms, leaving relatively open questions the only way to ensure sufficient selection impact. Limiting the insurance industry on the questions they can ask will reduce the underwriting capability and ultimately lead to an increase in anti-selection. Such anti-selection risk will have to be cross-subsidised by other policy holders in the insured pool, which ultimately will lead to prices to go up or products to be withdrawn. Certainly open questions should focus on what is relevant, for example be limited in time to ensure only what is important for the risk profile for that product, e.g. \"Have you ever been to the doctor?\" is clearly excessive and if answered completely would generate too much irrelevant information. However, \"Have you consulted a medical practitioner within the last 12 months?\" could be a valid line of triage for a simple product with no further questions being required if answered no. The increasing role of expert systems also needs to be considered as these influence the way questions are asked, with reflex questions from these being asked at point of sale which can ensure only relevant information is provided from even open questions."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"Subjective questions should be prohibited. They prompt answers which are based on an excessively vague personal assessment. Answers to such questions can be difficult to interpret."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1,null,"Such questions should be avoided as in some cases people can feel ill although they are not."]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"The respondent needs to be aware of relevance.  Subjective and arbitrary questions should be avoided. With open / subjective questioning, the respondent may  lack objectivity and the ability to place themselves appropriately on any scale of \"good health\""]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities",1,null,"Subjective data can always be disputed and may be interpreted differently depending on socioeconomic factors such as education.   If collected data is not unequivocal, there is a risk of wrong decisions."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1]
["Universities","Hungary","Central European University, Budapest",null,1,"It is hard to draw the line between objective and subjective questions, self-perception is indeed important in assessing health conditions."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"It is important that any questions asked are clear, objective and unambiguous.  Subjective questions may be vague and  ambiguous and may give rise to confusion and misunderstanding on the part of the insurance applicant.  Further, if questions are subjective and open-ended, an insurance applicant might disclose additional information that is not relevant to the risk in question.  This additional information might be misinterpreted and used against the applicant in the underwriting process.  In accordance with fundamental human rights, and to ensure access to insurance for all individuals, it is important that questions on questionnaires are clear and unambiguous and in accordance with the principle of relevance.   "]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1,null,"Indicative general questions have to be avoided."]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","Greece","National Bioethics Commission",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"Whenever possible collect objective information, it is preferable because it provides greater reliability."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"Insurance companies must ensure that the questions put in health questionnaires are clear. They must relate only to substantiated facts or illnesses and should not be worded openly. Over general questions and forms of wording such as “Do you consider yourself to be in good health?” should be avoided."]

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["Activity sector","Country","Organisation","1.b  Which are the other key qualitative criteria that questionnaires should comply with to\nthat end?"]
[null,null,null,"Comments (if any)"]
["Patients","Europe","Alzheimer Europe ","Respondents should have the possibility to add further information which they feel is relevant to the correct interpretation of their response. This is particularly important in cases where a respondent might feel that neither option is correct."]
["Patients","Europe","Autism-Europe","Only questions on relevant health data strictly related to the current health conditions of the applicant should be included."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS","It is absolutely essential for the questions to be clear and relevant.."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé","Convergent questions, which enable information to be gleaned when the answers are combined, should be prohibited."]
["Consumers","France","Confédération syndicale des familles (CSF)","Questionnaires should be set out in a document separate from the contract so that they are not buried among other information and applicants can gauge the full significance of the questionnaire. They should be signed by the parties to the contract (not to give them any overriding contractual status but in order to alert the parties to the importance of the document).\nLastly, the questionnaire should state (in bold type at the top of the paper) why the information is being requested and what risks are run by anyone making a false statement."]
["Consumers","France","Union nationale des associations familiales (UNAF)","Use of clear language / intelligibility."]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]","Questions have to be necessary, adequate, relevant, proportional and non-excessive (DH-BIO/INF(2012)1, page 17, paras 81-84)."]
["Unions","Europe","Confédération Européenne des Syndicats","Questionnaires should not help to foster discrimination or undermine fundamental rights. The reason why the questions are being put should be clear along with the potential consequences of the answers."]
["Insurance","Netherlands","Achmea","High sensitivity, maximum contrast, clear information to applicants on goals, rights and obligations."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)","High sensitivity, maximum contrast, clear information to applicants on goals, rights and obligations."]
["Insurance","Netherlands","Nationale Nederlanden/ING","Uniformity amongst insurers of the same type of insurance."]
["Insurance","Sweden","Svensk Försäkring","Information to applicants, explaining questions, rights and obligations."]
["Insurance","United States of America","VFD Consulting, Inc.","Questions must address risks associated with the type of insurance in question, which may also include the ability to pay for the insurance in a timely way."]
["Insurance","United Kingdom","Association of British Insurers - ABI","Our industry guidelines set out principles and requirements for the design of underwriting questionnaires and these are based on considerable combined experience."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re","Information to applicants, explaining questions, rights and obligations."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited","Understandable and relevant and whenever possible proveable at point of claim (although the latter point is not always possible to prove, but questions may still be valid without this, e.g. \"Have you used any illicit drugs in the past 5 years?\" may be difficult to prove at point of claim, but does serve a valuable sentinel role)."]
["Medical professionals","France","Académie nationale de médecine (France)","The main thing is for questionnaires to be understandable to applicants and not to be open to interpretation or doubts. Answers must follow on naturally from the questions. Questions should also be directly connected with the risk to be insured. "]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)"]
["Medical professionals","Luxembourg","Collège Médical","The appropriateness and relevance of the medical information requested and its proportionality to the information required to assess the risk to be covered."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors","Any questionnaire must have proven validity, and be shown to have appropriate levels of specificity, sensitivity, transparency, objectivity, and relevance with respect to the information sought."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]"]
["Geneticists","Latvia","Latvian Society of Medical Genetics","The individual should have the right not to disclose medical information that he/she considers might affect his/her state/condition which could lead to his/her discrimination in future."]
["Geneticists","United Kingdom","PHG Foundation ","Data collected by insurers may be used both for the purposes of underwriting, and subsequently for claims assessment. It is therefore vital that this data should be assessed using robust qualitative criteria. Failure to do so could result in poor decision making (if the evidence on which these are based are unsound) resulting in injustice, discrimination and stigmatisation. "]
["Geneticists","France","Fédération Française de Génétique Humaine","Established symptomatic diseases in the subject; the subject's current state of health.\n"]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n","Questions should be related to measurable units which are validated as relevant for underwriting."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)","There must be a clear and proven relationship between the data collected and risk estimation. "]
["Universities","Hungary","Central European University, Budapest","Aim of the questions should be clear; redundant questions should be avoided; questionnaires often unnecessarily enquire about life style and other sensitive questions, such as sexuality. If these questions have any relevance they should be scrutinized.  \n"]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland","One of the key principles in insurance is that of proportionality, and this is particularly relevant with regard to questionnaires.  The collection of data by means of  a questionnaire and the subsequent processing of this data for underwriting purposes must have due regard to the insurance applicant's personal rights.  These rights include primarily the right to privacy, the right not to know, and the right not to be discriminated against.  Additional rights include the right to access to insurance, in accordance with the social purpose of insurance.\nFurther, particular attention must be paid to the rights enshrined in the United Nations Convention on the Rights of Persons with Disabilities (\"CRPD\") and it is important to emphasise the relevance of the CRPD, its impact on this area, and on the area of human rights law generally.  There are now 112  ratifications of the CRPD (including  ratifications by 31 Council of Europe states).  In addition, the European Union has separately ratified the CRPD, representing the first time the EU has ratified an international human rights treaty, and illustrating the dedication to ensuring the fulfilment of fundamental human rights.\nPrinciples of equality and non-discrimination are underlying concepts which animate the Convention, (for example, Article 5 of the CRPD).  The CRPD also promotes the right to dignity and integrity of the person.  Importantly, the CRPD focuses on the inclusion of persons with disabilities (in employment, education,, political life, health and society).  By creating barriers to insurance, whether by devising prohibitively vague questionnaires, or misusing genetic information/genetic test results, this may result in the unjustified exclusion of certain vulnerable individuals, with undesirable social consequences. "]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]","As far as possible, one should be able to answer to the questions with precise information or even yes or no. Example: what medication do you currently take (list names), how many pills of each drug are you taking, etc.? "]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health","Validated measures for assessing functioning, ICD for describing diagnosis."]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission","Questions must focus only on data related to medical risks of high certainty. It is not justified to collect excessive health data."]
["Consultative bodies","Spain","Spanish Bioethics Committee","\n"]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL","Questionnaires must meet the quality criteria referred to in our reply to question 1."]

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["Activity sector","Country","Organisation","2.a  Insurance applicants should be allowed to obtain clarifications on the meaning of the questions asked in order to be able to reply appropriately. Do you agree with this proposal?",null,null," 2.b  If so, how should applicants obtain these clarifications?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,"It is a minimum requirement that respondents fully understand the question being asked in order to answer honestly but not necessarily that they understand why the question is being asked as this may result in biased answers in some cases.","The questionnaire should be accompanied by a document providing guidance on how to interpret and respond correctly to the questions along with contact details of somebody who is available to answer individual questions. "]
["Patients","Europe","Autism-Europe",1,null,null,"Availability of a more detailed written explanation in a plain language for each question and /or of a reference person among the insurance staff with the capacity to explain questions in a plain language.   "]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,null,"Applicants must be given a telephone number or e-mail address through which they can contact the insurance company for clarification. In practice, they are often referred to an intermediate insurance agent or broker and, unfortunately it is uncertain whether their advice commits the insurance company. If the insurance company does not consider itself bound by the advice of intermediaries, it must say so clearly, preferably on the insurance contract questionnaire."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,null,"By setting up an information desk that can be accessed directly by telephone or the Internet."]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"Quite clearly, an insurance applicant who does not understand the meaning of the questions put cannot answer them properly. Consequently, questions should be put clearly without any possible ambiguity. Open questions should therefore be completely ruled out. Lastly, a question considered to be ambiguous should be treated as a non-written question and hence work to the insured person’s advantage.   ","Firstly, most insurance applicants would easily understand the meaning of questions if they were written properly (see question 2.a). Otherwise, if it is considered necessary to provide explanations, it is easy to imagine drawing up an appendix to the questionnaire explaining the meaning of the questions point by point. An alternative would be to add explanations in italics underneath each question."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1,null,null,"Access to a free help line."]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,null,"The insurer or any person entitled to hand out the questionnaires has to provide the insurance applicant with appropriate information on the possible consequences of such collection/processing of health-related data on his/her insurability (DH-BIO/INF(2012)1, page 17, para 80)."]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,null,"All questionnaires should state what practical arrangements have been made to obtain clarification. An independent public monitoring body should check that these clarifications enable insurance applicants to understand the questions put and the implications of their answers."]
["Insurance","Netherlands","Achmea",1,null,"Redundant question! Applicants can only give the correct answer to questions they understand, so clarifications are indispensable.","Online information, or leaflets attached to questionnaire."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"Applicants can only give the correct answer to questions they understand, so clarifications are indispensable.","Online information, or leaflets attached to questionnaire."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"If feasible.","By telephone."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",1,null,"It is reasonable to allow an applicant the opportunity to understand the question being asked.","The mode of delivery should determine the channel used.  Questions to online questionnaires can be answered online, and questions about questionnaires delivered in person should be answered in person."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"We agree that applicants should be able to clarify the meaning of application questions. This supports applicants in taking responsibility for understanding the nature of the contract they are entering into and the contractual requirements.","Applicants are supported by insurers in this and seek clarifications on the meaning of questions in a number of ways, including:\n- customer guidance provided by the insurer or industry-wide guidance\n- advice from a financial adviser\n- by using a helpline\n- by way of tele-underwriting, where well-trained staff take the customer through the application over the telephone\n- other options as decided by the insurer based on knowledge of their customers.\nWe note that, in the UK, the Financial Ombudsman Service often applies the principle where, if the meaning of the question is unclear or ambiguous, the meaning that is advantageous to the policyholder is preferred."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"The better informed, the better people are able to answer the questions, which is good for both insurer and customer. Applicants should be allowed to be informed about the general goals of the questions. The insurer should not be asked to declare for every component of the questions the relation with the insured risk.","The questions to the applicant have to be worded in a way that every aspect is clear, since these data are the basis for risk assessment  It is already now common practice that the applicant receives usually or on request a wide range of information (clarification) by leaflets, FAQs, Hotlines, explanations by the agents."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"Questions must be understandable, but where it is necessary to include technical or complex words in a question, for example related to particular medical conditions, it should be possible for the customer to obtain clarification and indeed insurers already provide this service.","This role is filled by the agent in the traditional sales environment which still accounts for the majority of sales in many European markets. Online sales are, however, increasing and here it should be relatively easy to have click on explanations. In either environment, if the customer has further questions, they can call, e-mail or write to the company, e.g. an underwriter, for an explanation. More simple and clear questions would also help reduce the need for such additional explanations, but consumers do not typically regard lists of medical diagnoses as being clear and simple. Quite the opposite, as they will not have heard of some relatively common diseases, so lists of \"Have you in the last X years been diagnosed with the following:…\" type questions can actually generate more confusion amongst consumers than more plain language questions such as \"Have you had more than two weeks consecutive time off work in the last 12 months due to illness or accident?\"."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"This is essential in order to obtain the best possible answers.","It should be made easy for insurance applicants to put questions. Contact should be possible by e-mail, telephone (a verbal exchange can be useful) or by post. All possible means should be made available."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1,null,"All insurance applicants must be given balanced, clear and relevant information.\nArticle 35 of the Code of Medical Ethics states:\n“Doctors shall provide the patients they are examining, treating or advising with balanced, clear and relevant information on their state of health and any investigations or treatment proposed. Throughout the course of an illness, they shall take account of the patient’s personality when explaining matters and ensure that what they say is understood”.\n","Insurance applicants should be able to obtain clarifications from a medical consultant who is not their usual doctor."]
["Medical professionals","Luxembourg","Collège Médical",1,null,null,"The key is balanced, objective prior information and the possibility of seeking assistance from a trusted person. "]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"Meaning and purpose of each question needs to be clear to the respondent, avoiding the risk of misinterpretation and inappropriate release of information.","Clear written materials should be provided at the initial contact with the insurer.  If there are further questions, there should be a variety of accessible points that the applicant / respondent can access for further information and clarification, including but not limited to telephone, email, post.  Any verbal correspondence must have written follow-up if there is any variance  from the original supplied materials."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,null,"In a written form."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1,null,null,"They should have an opportunity to ask for an independent consultation."]
["Geneticists","United Kingdom","PHG Foundation ",1,null,null,"It may be possible to facilitate this process using a neutral third party so that the identity of the applicant is not necessarily disclosed to the insurer when enquiries are made, so as to preserve the privacy of the applicant."]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,null," Mail, Internet, face-to-face or telephone contact."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"In the best interest of both parties, the client should have the possibility to give as correct as possible an answer to all questions. ","Written clarifications should be available as well as possibilities to ask personal questions e.g. via a telephone service."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,null,"Extended explanations on a web site. Possibility to contact insurance company for clarification (by telephone or E-mail)."]
["Universities","Hungary","Central European University, Budapest",1,null,"Insurance actuaries and insurance lawyers often develop a technical language  that is not fully comprehensible for non experts. Health and medical knowledge of the applicant may not be sufficient, especially if doctors have not informed them previously. Furthermore, in many countries this situation is just the opposite (quite irregular) scenario to what happens normally to patients within health care, when a medical doctor takes an active role in providing anamnesis. Here applicants themselves have to provide such data including often a comprehensive medical history of several decades.  ","They should have a right to ask questions and receive answers,"]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"To ensure that an insurance applicant does not reveal additional, irrelevant information that may be misinterpreted by insurers and used against him/ her, it is important that there is no confusion or ambiguity as regards the questions asked.  This allows for the safeguard of an individual's rights and ensures fairness of contract between the parties.","Insurance applicants should be free to contact the insurance companies to receive clarifications on the meaning of questions.  In addition, there could be provision for a helpline for insurance applicant to contact for clarifications."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1,null,null,"In writing."]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1,null,null,"Face-to-face or by internet."]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"It is absolutely essential that insurance applicants are allowed to obtain clarifications on the meaning of the questions asked. It is not uncommon that the applicants are not familiar with medical terms, what exactly they refer to or what they include.","At a first stage, the applicants may obtain clarifications about certain questions in writing. If necessary, at a second stage, the applicant may need to come in direct contact with a person that will provide clarifications."]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"They should have all the information to answer all questions appropriately.","Applicants must obtain written and oral information."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"This follows on from respect for the principle of free access.","Through reference to the relevant information in the general terms and conditions of sale before the negotiation of the insurance contract or during an interview with the insurance company."]

{"sheet":"Q3","index":5,"n_rows":38,"n_cols":7,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,6],[13,3,13,6],[31,3,31,6],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[0,6,1,6],[16,3,16,6]]}
["Activity sector","Country","Organisation","3.a  Only the results of medical examinations which meet established scientific and clinical standards and are used in clinical practice should be collected for insurance underwriting. Do you agree with this proposal?",null,null,"3.b  If so, how can this be ensured?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,"It is unethical to expect people to undergo any medical examination which does not meet established scientific and clinical criteria and it would be unethical to use the results of such examinations for the purposes of insurance underwriting. Such information would not be a reliable basis for decision making and may involve discrimination. ","Insurance companies should be able to provide, if requested, supporting evidence to prove that underwriting is based on established scientific and clinical standards. This should be a legal requirement in keeping with legislation prohibiting discrimination."]
["Patients","Europe","Autism-Europe",1,null,null,"Through ethical codes establishing that only information which is documented by clinical records or tests should be taken into account."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"The scientific and clinical standards referred to must be very broadly accepted standards in the medical circles competent in the different spheres concerned.","Through precise information (especially if specifically requested) provided by the insurance company to any person who undergoes such tests."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,null,"Through the referencing of the relevant standard."]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"Logically, insurance underwriting should be based on the current state of the world’s scientific knowledge (as recognised independently by the majority of scientists). There should be no other possible approach.  ","A committee made up of scientists (without any conflicting interests), a representative of the insurance companies and perhaps a representative of the Council of Europe could meet once a year to pinpoint issues which were causing problems. These could be taken up by the Council of Europe, which could then gather more information by turning, for example, to consumers' associations, human rights bodies and legal practitioners. "]
["Consumers","France","Union nationale des associations familiales (UNAF)",1,null,null,"Listing of standards."]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,null,"Medical practitioners performing examinations requested by the insurers are expected to proceed to an accurate and independent evaluation of examinations’ results concerning the person’s health (DH-BIO/INF(2012)1, page 11, para 48)."]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,"This is an essential requirement but insufficient in itself. It is not enough for medical tests to be scientifically validated; they must also pursue a legitimate and necessary purpose in connection with the information collected for insurance companies.","A public body should validate tests considered to be legitimate to collect information for insurance purposes. Decisions on this issue should not be left to the insurance companies’ discretion. Crucial public interests are at stake and justify the limits that are placed on insurance companies' freedom to act."]
["Insurance","Netherlands","Achmea",null,1,"Insurance underwriting is diagnostic and prognostic testing in a specific screening situation with adverse selection of prevalent cases. Clinical standards lack most of the qualities that are indispensable in this situation and should be regarded as obsolete.","Promotion of evidence-based underwriting as special form of evidence-based non-clinical practice. Insurance doctors (who are in most cases independent and self-supporting) should be granted free access to collections of prognostic cohort studies and systematic reviews. Medical journals should stop the publication bias that is the result of selective admission of (low quality) studies about insurability."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"Insurance underwriting is diagnostic and prognostic testing in a specific screening situation with adverse selection of prevalent cases. Clinical standards lack most of the qualities that are indispensable in this situation and should be regarded as obsolete.","Promotion of evidence-based underwriting as special form of evidence-based non-clinical practice. Insurance doctors (who are in most cases independent and self-supporting) should be granted free access to collections of prognostic cohort studies and systematic reviews. Medical journals should stop the publication bias that is the result of selective admission of (low quality) studies about insurability."]
["Insurance","Netherlands","Nationale Nederlanden/ING",null,1,"And/or is ok, but too little of medical practice meets all three qualifications."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Clinical practice is different than insurance medicine.  Clinical practice involves far more issues than insurance; insurance underwriting focuses on the determination of risk.  Medical examinations that are tailored to insurance needs and goals are far more appropriate for insurance than examinations that are geared to clinical practice.","Let the insurers determine for themselves what their risk assessment needs are, and then allow the insurers to follow through without outside interference."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"There are two situations where medical examinations might be undertaken and the information used by insurers. The first situation is where the medical examination is undertaken for the consumer's health. If a consumer then applies for insurance, the insurer may need to request information from the medical professional about that consumer's health. In this case, the insurer may use the results of medical examinations for underwriting.\nThe other reason may be in the more limited circumstances where the insurer requests that an applicant undergoes a medical examination. These requests will only be made where it is relevant and necessary to underwrite the cover. In both situations the expectation would be that the medical professional would follow appropriate and established scientific and clinical standards when conducting medical examinations, and the information provided to insurers would therefore reflect those standards.\nWe note that the medical professional is not an underwriter. It is for insurers to decide whether the information provided about the applicant's health is necessary and relevant to underwriting the cover. Only this information is used.\nTo help this process in the UK, there is agreement between the ABI and the British Medical Association that guides what information should be provided by the medical professional to insurers - this recognises the importance of treating the health information of the applicant carefully and appropriately.\nWe do note that underwriting is broader than medical examinations, and that it can be appropriate to use other sources (e.g. public health and screening standards) when underwriting cover.\nInsurers use best practice and appropriate sources to determine the information relevant and necessary to the underwriting process – what is appropriate information depends on the product.\nWhere there is alignment, the appropriate standards should be applied.","In terms of the standards used by medical professionals when undertaking a medical examination, in the UK there are legal and ethical requirements on registered medical professions. We would expect those to be followed, and the British Medical Association to enforce those requirements.\nIn terms of requests by insurers for medical information or medical examinations, the Equality Act 2010 sets out a framework which insurers must adhere to when underwriting."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"No, because clinical standards are devised for use in clinical situations. Insurance underwriting is not a clinical situation. Public health and screening standards should be used, with emphasis on adverse selection.","Promotion of evidence-based underwriting as special form of evidence-based practice. Collection of prognostic cohort studies and systematic reviews accessible to insurance doctors. Private insurance medical studies are currently banned by most medical journals, unless the result is negative for the insurance industry. This results in a huge publication bias."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"Insurers only use tests which are already commonplace and approved in clinical medicine. The requirements of insurance testing are, however, slightly different from clinical medicine, as we are usually testing asymptomatic individuals and need to take account of customer convenience in what tests are obtained more than is the case in medical practice. \nInsurers also avoid using unproven tests, as without valid data on the efficiency of each test we do, it is impossible to calculate the cut off point where the protective value of that particular test outweighs the costs. Insurers are also keen to avoid tests which generate too many false positive results, which are as bad for business as false negative.\n","It is already ensured by market competition and cost-benefit analysis of testing results. To obtain tests which give inaccurate results would not be good business practice. Insurers consider not only the financial equation behind each test, but also the implications for the customer, and tests which generate inaccurate results would not only be costly, but would also have a negative impact on the reputation of that insurer. Insurers also use licensed medical practitioners to perform their tests, and they would refuse to carry out tests which are not clinically proven."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"This requirement is essential to arrive at high quality and non-questionable results.","Good practices are determined in particular by academic societies. This applies to the main medical conditions. They are never entirely binding, leaving it to the health professional to choose the best possible approach for each patient. Any medical tests concerned must follow the same process. They must meet any scientific standards that can be established in the field."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1,null,null,"Requests to validate such examinations and tests should be made with a recognised medical certification body."]
["Medical professionals","Luxembourg","Collège Médical",1,null,null,"By refusing to take account of freely accessible tests whose clinical and scientific validity cannot be established."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"Any results collected for the purpose of underwriting should be from investigations that are evidence-based, with known quality assurance standards.  This is required to ensure accuracy of interpretation and validity of the results.  Any information obtained from research or direct-to-consumer investigations should be excluded as these investigations have, by their nature, not necessarily been peer-reviewed or validated and therefore lack quality assurance and oversight. "," Legislative oversight should be mandated and incorporated in written and available company policy.  Relevant oversight committees should have access to and review the slate of requested investigations on a periodic basis, to ensure that the routine requests are generally recognized as having clinical validity.  An independent \"ombudsman\" should also be in place, and a panel of appropriate experts should also be available to review the file if a conflict or dispute arises."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,"a) The results of medical examinations must be based on evidence-based medicine in the application of scientific guidelines; b) well-educated and trained professionals; quality assessment. "]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1,null,null,"According to the national guidelines for diagnosis of common disorders or conditions."]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"Although this should be the general rule, there should be some provision for exceptions to apply. For example, one could imagine a situation where medical examinations (and workplace insurance) could legitimately include a predictive genetic  test for susceptibility to teratogens only generated as a result of occupational exposure (and not routinely tested for in clinical practice). It might be in the employee's best interests to have these tests rather than be exposed to teratogens that would otherwise cause harm. ","In the UK, the availability of predictive genetic tests for use by insurers could be linked to the UK Genetic Testing Network (UKGTN) genetic test evaluation system."]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,null," By ruling out self-testing over the Internet.\nThrough proper medical supervision of tests (prescription and interpretation) and technical supervision (of reliability and quality).\n"]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities",1,null,"Only such information reveals a sound basis for underwriting.","By only using information from fully registered and accredited health care units acting under national law."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,null,"Only results obtained from public health services or equivalent (state recognized) private health service providers can be used - data quality is essential. "]
["Universities","Hungary","Central European University, Budapest",1,null,null,"Only established and licensed methods should be used."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"In accordance with privacy and confidentiality requirements, and to ensure against unfair discrimination in underwriting practices, it is important to ensure that only relevant information is taken into account. It is possible that doctors furnishing medical information, for example, a family doctor, may inadvertently provide an insurance company with a vast amount of medical information relating to an individual's entire medical history (including family history of illness).  This surplus information may be used negatively by an insurance company in the underwriting process.  In addition, with the deluge of medical information being generated today, for example, from the increasing use of genetic testing (particularly the use of direct-to-consumer genetic testing), it is possible that some of this information is of limited scientific value and may not reflect the current health status of an individual. As a result, the use of this information for insurance underwriting may result in inaccurate conclusions and unfairly disadvantage insurance applicants.  ","The provision of clear guidelines that are made available to doctors involved in issuing medical reports and furnishing medical information, detailing the scope of the information that is to be passed on to insurance companies. It is also important to ensure that doctors involved are informed of the requirement to furnish only necessary medical information - for example, to differentiate between genetic and non-genetic information.  Further, it is important that an individual's consent is obtained before any information is exchanged with the insurance company. "]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1,null,null,"The examination has to be performed by licensed doctors/centres."]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"Data that do not meet established scientific and clinical standards, and are not used in clinical practice are subject to change in the future. Therefore they should not be collected for insurance underwriting. ","A public authority could verify this, or even provide a relevant approval of questionnaires."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,null,"With a clinical report on the results including the clinical significance of these. For some test, should be collect the method used for analysis and the date."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"The rule of relevance referred to in the law cited in our reply to question 1 should be applied.","To safeguard this principle, all other collections of medical tests and results must be prohibited."]

{"sheet":"Q4","index":6,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","4. Third parties should ensure that they disclose only data which correspond to the request and are relevant for the risk evaluation (e.g. doctors should not send full medical records or transmit data which do not concern the patient’s health). Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,"This should be covered by legislation on medical secrecy and confidentiality. If not adequate in a particular country, specific rules should be established. "]
["Patients","Europe","Autism-Europe",1,null,"Disclosure of full medical records would entail a disproportionate interference in the rights of the individual to privacy."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",null,null,"In Belgium, this is completely banned. It is inadmissible for doctors to whom information has been given in the strictest confidence to abuse this trust."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,"Penalties should be provided for in the event of any infringement."]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"First of all, data obtained by third parties must comply with the applicable regulations, including those concerning personal medical data, the Human Rights Convention, the case-law of the Court of Human Rights and all other conventions. In the European Union, states must also comply with Directive 95/46 EC on personal data protection. All these texts are extremely clear. Any personal data collected and processed must be relevant to the purpose of the procedure. Under no circumstances should a person’s full medical records be passed on to an insurer! This should be entirely prohibited and there should be provision for doctors to be made liable for such an act. Perhaps the Council of Europe should work more proactively with doctors to inform them about their rights and duties, particularly in the sphere of personal medical data. We note that there is considerable confusion in this area."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"The principle of medical confidentiality is the bedrock of the physician-patient relationship. This is a strict legal duty of the physician (DH-BIO/INF(2012)1, page 12, para 50)."]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,"Data should be relevant but they should also avoid creating discrimination or undermining fundamental rights. For example, some types of health insurance also cover costs relating to maternity. It would be incompatible with privacy laws to ask a female insurance applicant whether she was likely to have children or whether she was not able to have them for medical reasons."]
["Insurance","Netherlands","Achmea",null,1,"The insurance doctor is the only professional who can judge what is relevant and what is not. Attending physicians might jeopardize their relation with the patient if they start assessing the relevance of medical information. They might feel obliged to disregard relevant information, which at a later moment could lead to legal actions by the insurer for non-disclosure (for which the applicant remains responsible)."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"The insurance doctor is the only professional who can judge what is relevant and what is not and has an obligation to ask for relevant information only. Attending physicians might jeopardize their relation with the patient if they start assessing the relevance of medical information asked for by the insurance doctor. They might feel obliged to disregard relevant information, which at a later moment could lead to legal actions by the insurer for non-disclosure (for which the applicant remains responsible)."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"But all data which are possibly relevant for risk evaluation should be sent."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"It is not appropriate for an attending physician to second guess or interfere with a patient's commercial business transactions.  The assumptions that an attending physician makes in limiting medical records often comes back to haunt the patient later, and the results can be both avoidable and tragic.  The patient has already signed a consent form to release all medical records - it is not a physician's role or responsibility to limit what a patient has already fully consented to share."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"We have a well established practice in the UK agreed between the insurance industry and the medical profession. Firstly, the consent of the applicant must be given. Then, the insurer will advise the doctor and the applicant that they will not be seeking particular types of information (for instance, insurers request that most predictive genetic test results are excluded from the information provided). There is a formal agreement guiding this process.\nOnce the information is submitted, there is a final check because insurers only use the information that is relevant and necessary. In situations where additional information is provided beyond that which should have been provided, great care is taken to avoid using that information. In the UK, legislation and industry guidance ensures a robust and consistent approach.\nOverall, this approach provides practical checks and balances to treat the applicant/patient's data appropriately and carefully."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"If attending physicians are not allowed to send this information, they are obliged to assess whether the information is relevant. This means that the attending physician becomes responsible for the decision about relevance. This might jeopardize his relationship with his patient. Therefore, the restriction must be laid down with the (independent) medical officer of the insurance company, obliging him to only ask for relevant information. This way the responsibilities remain in the hands of the right person."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Ideally the doctor should indeed only give relevant information, but to do such screening takes a lot of time for a busy medical practitioner, and failure to allow the quicker option can result in the insurance not completing for their patient. It is also difficult for insurers to know what is relevant until they have seen the data, and even the doctor is not well placed to judge this, i.e. a history of back pain may be irrelevant for one product such as life insurance, but very relevant for another such as disability coverage. However, most doctors do not have the required level of insurance knowledge to make that differentiation, and are anyway already facing such an administrative burden that asking them to take additional time to make these judgements would not be practical. "]
["Medical professionals","France","Académie nationale de médecine (France)",null,null,"In France, only the person directly concerned may communicate data to insurance companies so the question does not arise. If a doctor were to pass on information on his or her patient directly to the patient’s insurer, he or she would be breaking medical confidentiality, which is a criminal offence. If this question does arise in other countries, it is indeed essential that the data that may be sent are strictly limited to those which correspond to the insurer’s request, and nothing else."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"Risks include but are not limited to the accidental provision of social history and test information that is irrelevant to insurance underwriting and may inadvertently harm the patient.  In addition, there is a potential risk of providing information that identifies and implicates other family members, if family history information is in the medical record."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"Our impression is that third parties sometimes send full medical records to insurers because this is, for them, the most expedient approach. If this recommendation  is adopted, then the costs to the third party and the competencies required by them in selecting relevant (and excluding irrelevant) data needs to be taken into account. This might have a knock-on effect of increasing the costs that are paid by insurers to third parties (such as general practitioners) for providing this information. Consideration is also needed of the potential liability issues which might arise if relevant information is not disclosed by third parties."]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"All information in patient files must be regarded as confidential, unless permission for disclosure is granted by the applicant. Such permission should only be requested for information that is relevant for underwriting."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"This also means that the doctor/GP must specifically select the relevant information from the patient's medical record - and also be careful not to give out information not asked for, or information about relatives without consent or when such information may be of harm to an ignorant third party."]
["Universities","Hungary","Central European University, Budapest",1,null,"This solution would be in accordance with the data protection norms."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"To ensure fairness in the underwriting process, it is important that only relevant information is disclosed, and only information directly corresponding to the request made.  It is possible that doctors carrying out medical examinations and furnishing medical information, for example, a family doctor, may inadvertently provide an insurance company with a vast amount of medical information relating to an individual's entire medical history (including family history of illness, and other genetic health information).  This surplus information may be used negatively by an insurance company in the underwriting process.  There is a risk that insurance companies may misinterpret and overestimate any surplus information given, potentially leading to unfair premiums and/or the refusal of insurance coverage."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"Certain data corresponding to the relevant request must be disclosed.  "]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"It is the way to preserve the confidentiality of the data."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"Only data which applicants are aware of should be passed on. The relevancy rule should also be respected."]

{"sheet":"Q5","index":7,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,3,0,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","5. Third parties should only communicate these data with the insurance applicant’s express consent. Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,"The exact meaning of \"express consent\" should be defined in future documents as different terms may be used in different countries."]
["Patients","Europe","Autism-Europe",1,null,"The right to privacy of the data subject should be respected."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"Completely prohibited, as in Belgium."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"As these data are private and sensitive, they should not be passed on without the applicant's express consent.\nA consent clause in the insurance contract is not enough to establish this consent. Consent should be obtained after the negotiation of the contract so that applications for insurance cannot be rejected because applicants refused to consent to the communication of their personal data. Consent should also be given in writing in a specific document which would be the only backing to authorise a third party to pass on personal data."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"Effective respect for private life may therefore require States to make regulations compelling those operating in the private sector, including insurers, to respect the confidentiality of health-related information (DH-BIO/INF(2012)1, page 14, para 60)."]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,"This is a necessary but inadequate requirement. In most cases, insurance applicants do not have the real room to negotiate that would enable them to give their informed consent. When insurance is linked to an employment contract, the decision to take out insurance does not necessarily depend on the applicant’s individual will."]
["Insurance","Netherlands","Achmea",1,null,"The applicant should give informed consent."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"The applicant should give informed consent."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"It's the law in Holland."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",1,null,"This is well accepted and already in practice."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"In addition to this principle being well-established industry practice, in the UK the Access to Medical Records Act 1988 requires that a request for medical records of an individual cannot be made for insurance purposes unless the insurer has notified that the request will be made and the applicant has given his/her consent to making the request."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"Informed consent."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"Consent should indeed be given before releasing any health related data. The consent wording on the application form should be robust enough to enable release of data from several sources, as specific consent wordings related to each third party can excessively delay the acceptance process. "]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"Transparency towards insurance applicants is essential. It makes for a balanced two-way discussion with the insurer."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1,null,"Documents should be handed directly to applicants."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,"Not relevant; see extract of the Genetic Diagnosis Act contained in our reply to question 1.; exceeds the insurance contract a value more than 300,000 EUR the answer will be yes."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities",1,null,"It should be known to the client which information is given to the insurer and that the client has approved this. "]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"There may be a discrepancy between the applicant's information on own health (e.g. \"I am healthy without any known diseases\") and the reality (e.g. the applicant is being treated for a number of relevant diseases). The doctor/GP must be objective in such matters - and information about diagnosed conditions of relevance to the insurance company should be given - even though this contrasts with the information given by the applicant. However, also in this case the applicant must have consented to medical information being given to the insurance company.  "]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"Health data are classified as sensitive personal data (for example, pursuant to European Union data protection legislation - Directive 95/46/EC on the protection of individuals with regard to the processing of personal data and on the free movement of such data), and in order to protect an individual's privacy, it is necessary to obtain an individual's express, informed consent. Doctors should only disclose information to which the insurance applicant consents (and any information disclosed in the absence of consent constitutes a breach of privacy). It is also important that the fundamental principle of medical confidentiality is upheld and to ensure the doctor-patient relationship is maintained, for the benefit of the patient. The requirement of express consent provides that this principle is respected."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"It is important that the insurance applicant is informed and gave his consent in order to communicate these data. This will ensure protection of the principle of medical confidentiality and the patient/doctor relationship. "]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"The applicant's consent is always necessary."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"There is a need to prevent potential abuses."]

{"sheet":"Q6","index":8,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","6. Only data known by the applicant should be communicated by third parties to the insurer. Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,"But it should not be insensitively communicated to the applicant for the sole purpose of communicating it to an insurer. Any communication of medical information should be carried out in the appropriate manner and in the case of sensitive medical information such as genetic information only with proper counselling. "]
["Patients","Europe","Autism-Europe",1,null,"The right \"not to know\" of the  applicant should also  be respected. "]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",null,null,"Completely prohibited, as in Belgium."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,"Penalties should be provided for in the event of any infringement."]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"In accordance with the right \"not to know\" (Article 10.2 of the Convention on Human Rights and Biomedicine), applicants may refuse to be informed about certain aspects of their health. Yet if this information is passed on to an insurance company and the condition constitutes a risk, applicants should know why their insurance premium is increasing. However, they can only know this if they discover what they did not want to know (their real state of health). Consequently the answer is no, data which the insurance applicant does not know about must not be passed on to the insurer (even if this means an additional premium). Any state which provided for such a possibility or did not take the necessary steps to prohibit such measures would  have to answer to the European Court of Human Rights."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"Effective respect for private life may therefore require States to make regulations compelling those operating in the private sector, including insurers, to respect the confidentiality of health-related information. The Convention of Human Rights and Biomedicine lays down that individuals are entitled to know any information collected about their health, if they wish to know. The right to know goes hand in hand with the \"right not to know\", which is provided for also in the second paragraph (DH-BIO/INF(2012)1, page 14, paras 66-67)."]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,"This is a minimum but insufficient requirement."]
["Insurance","Netherlands","Achmea",null,1,"In most cases applicants only know the name or nature of their disease. Because of the differences in severity and course of the disease between applicants, all applicants with the disease will be declined if more detailed information is unavailable. To maximize the acceptance rate, it is necessary to differentiate between applicants on the basis of details (severity, course, success of treatment, test results, risk factors, complications). This implies that the insurance doctor should receive all data on disorders that were reported by the applicant."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"In most cases applicants only know the name or nature of their disease. Because of the differences in severity and course of the disease between applicants, all applicants with the disease will be declined if more detailed information is unavailable. To maximize the acceptance rate, it is necessary to differentiate between applicants on the basis of details (severity, course, success of treatment, test results, risk factors, complications). This implies that the insurance doctor should receive all data on disorders that were reported by the applicant."]
["Insurance","Netherlands","Nationale Nederlanden/ING",null,1,"That sounds crazy; the treating doctor knows more about the disease than the applicant; that's the reason why we ask him/her."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"The applicant is not well served by sharing only what he knows to the insurer.  There are many risks that the applicant may not know that his physician does know that is critical for the insurer to know.  Limiting medical records that are shared with the insurer often comes back to haunt the applicant later, and the results can be both avoidable and tragic."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"The principle is a good one. However, we can foresee situations where the full medical picture is not communicated by the doctor to the individual for good reason, but is set out in the medical records (which would be provided to the insurer). One example could be where the individual reports a symptom to the doctor, who advises the more likely explanation (but also notes that there is a possibility of something more serious that should be monitored). In such circumstances, the medical records contain additional information that the applicant may not be aware of. Insurance policies can cover situations far into the future and the underwriting decision on a policy is made once only at the beginning. Therefore the insurer has to assess the risk based on the judgment shown by the doctor in the medical records and the judgment of the underwriter (perhaps also seeking the advice of the Chief Medical Officer). The insurer needs to handle the situation carefully, potentially seeking clarification from the doctor. As stated in the answer to question 5, the starting point should be the consent of the applicant."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"The applicant should know the subject of the data, of course. It is impossible to restrict the information to just the exact data the applicant knows (e.g.: only those laboratory test results the applicant might remember).You might have a situation in which the applicant doesn't (want to) know all the data, whereas they are relevant for the insurer."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Proving what a patient/customer knows can be a very difficult process, and doctors may in any event withhold some pieces of information from a patient for valid reasons ranging from expected lack of understanding to an expected adverse impact on the outcome due to the patient reaction. Even the doctor themselves may not have a full recollection of what exactly has been passed on to their patient."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"The same reasoning applies. It would not be acceptable for an insurance applicant not to know certain things about his or health status which the insurer does know."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1,null,"As long as the person concerned is informed of the purpose of processing the data and the information required to assess the risk to be covered."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"All records disclosed by third party should be known to the applicant to mitigate the potential harm to the applicant of unintended disclosure. "]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,"The contracting party of the insurer is the applicant, not third parties. Only the applicant discloses known illnesses. But provided the patient has signed a respective agreement to relieve third parties from their obligations of confidentiality - the answer should be \"yes\"."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"In theory this is desirable, but sometimes it might be difficult to establish the provenance of some data - especially if the third party has a professional relationship with multiple members of the same family, or the information is derived from familial pedigrees such as in a clinical genetics setting."]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,"Irrespective of the applicant’s opinion, only data prescribed by law and corresponding to that described in question 1 above may be passed on."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities",1,null,"It would not be in applicants' best interest for third parties to be given information not known to the themselves, particularly when these third parties are not health care professionals. This would amount to an unjustified breach of patient confidentiality, as consent could not  be implied. "]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"If sensitive personal health data related to the insurance applicant is being disclosed from a third party, this should be communicated to the insurance applicant and their express consent is required.  This requirement is in accordance with data protection laws and ensures that an individual's right to privacy is upheld. "]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,1,"The applicant must be informed of all available data concerning his health."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"Whenever possible, data should be supplied by the applicant, but permitted third parties may provide this information when it has the approval of the applicant."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"Insurance applicants have a right to know but also a right not to know."]

{"sheet":"Q7","index":9,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","7. Do the characteristics of genetic predictive data as described in particular in Chapter 2\nsection 1.a.ii justify some form of regulation of their use for insurance purposes?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1]
["Patients","Europe","Autism-Europe",1,null,"Use of predictive genetic test for insurance purposes has implications for stigma and discrimination. "]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"In Belgium the use of genetic data, whether predictive or not, is formally prohibited by the Terrestrial Insurance Contracts Act of 25 June 1992. The law on patients’ rights could also be used as an example for other legislation."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,"Legislation should be enacted."]
["Consumers","France","Confédération syndicale des familles (CSF)",null,null,"In view of the fact that the value of these tests is extremely debatable (particularly in the case of multifactorial diseases), their use, if authorised at all, should be governed by legislation including specific provisions on their weighting in actuarial calculations (which should therefore be minimal). Of course, we formally oppose the use of these tests by insurers, but if the Council of Europe deemed that it should be authorised, then extremely strict, clear and detailed rules should be adopted to supervise such practices."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1,null,"Yes, through legislation."]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"Their predictive value in relation to the development of diseases nonetheless remains extremely variable and, in the vast majority of cases, limited, owing in particular to the diversity of factors involved, non-genetic ones included, and to the complexity of their mutual interactions (DH-BIO/INF(2012)1, page 18, para 89)."]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,"The relevant legislation should prohibit all use of genetic predictive data for insurance purposes. "]
["Insurance","Netherlands","Achmea",1]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"Only predictive data with possible very serious consequences for underwriting should be asked."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"There is no material difference between data arising from genetic information regarding risk and data from other medical information.  There is nothing special about genetic information that should make it a separate class that should be handled differently."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"The first point we make is that the definition used across many countries varies considerably and it is important to be clear about the nature of this data. In addition, it is important to consider that individual countries have approached the issue in different ways and that these approaches can all work successfully (albeit differently). In the UK, the Concordat and Moratorium has worked extremely well for the benefit of all parties involved. For this reason, the ABI believe that regulation should be a matter for the member State to decide on based upon national needs and experience.\nSecondly, we find that there is already relevant regulation in place. For instance, there is data protection legislation at both national and EU level. Our view is that it seems sensible to maintain existing regulation, rather than create duplicative or contradictory legal regimes. We are also concerned to ensure that the legal regime does not allow for gaps in consumer protection or costly regulatory requirements.\nFinally, where regulation is deemed appropriate because the case is made for intervention, we believe that a consensus agreement works better than restrictive legislation in circumstances where the science is evolving rapidly. This is the approach followed in the UK - it provides a flexible structure built on agreement that evolves in a controlled way as the science changes. It means that we can limit\nthe use of data which could disadvantage certain groups at a time when the industry's ability to underwrite is not compromised by anti-selective behaviour in this area. We absolutely do not agree with outright prohibition."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"Genetic background covers more than 90% of all diseases. These data can only be interpreted in the clinical context, being an essential part of obtaining an overall picture of the risk to be covered. Using actively predictive genetic tests is not in the interest of the insurance industry, since we sell products which cover the uncertainties of the future. However if the applicant has used such a test without disclosing the result, he would be able to benefit from the information advantage on the expense of the insured community - comparable to insiders regulations in trading shares at the stock market, where such an information advantage is also forbidden."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"The characteristics of such tests themselves would not really justify any different handling than any other predictive tests, but social concerns and attitudes about them have resulted in some form of limitation in almost all countries. It should be noted however that no insurer requests predictive genetic tests, we simply ask for the same knowledge that the customer has, i.e. previous test results carried out in a medical environment, to ensure that the price to be paid by an individual matches the risks which that individual is aware of."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"These data have certain distinctive features. They relate to applicants’ and their families’ future state of health. This makes legislation on the subject essential. The question of the use of such data for insurance purposes cannot be overlooked. It needs either to be prohibited (as in France) or to be strictly supervised."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1,null,"Protection of applicants and their families."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"A predictive test does not guarantee that the applicant will become ill.  By definition, an individual undergoing a predictive test is well (with respect to the condition in question) at the time of testing.   Depending on the condition and the testing methodology, there is inherent variability in the predictivity, related to a myriad of confounding factors. Insurance companies should NOT have the ability to force the applicant to undergo any predictive testing in order to be eligible for coverage.  "]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,"Absolutely. Therefore we regulated \"Genetic Examinations in the Insurance Sector\" §18, GenDG."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"This section stresses the variability in predictive value that might result from these tests. Our view is that rather than taking a genetic exceptionalism stance (including genetic but marginally predictive tests) any regulation should stipulate, as in 7.b, that a composite assessment of predictive value and severity of the condition tested for should prevail.\nRegarding direct-to-consumer genetic tests for minor traits or ancestry, we would not wish to see these tests outlawed by regulation. Our view is that where testing seems to offer marginal risks or benefits, that the market should prevail, but that poor predictive values should be readily apparent from provider websites."]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"Genetic data as well as all data stored in a patient's health care files should have protection. With regard to the insurance situation these data may, bearing in mind their family nature disclose information on other relatives' future health. This information must be protected for the sake of the relatives who could be involuntarily exposed. Use of data from genome sequencing for risk factors negates the concept of insurance. "]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"Predictive genetic data has a major potential of being misused and misunderstood - by both parties."]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"Genetic information (for example, information gleaned from family history of illness) and the results of genetic tests reveal personal and unique information, not only about an individual, but also about that individual’s parents, children and siblings. Genetic information may be predictive. Genetic information carries stigma, and the misuse of genetic information has led to eugenics, racism and genocide in the past. Genetic information is regarded as unique by the public. Although none of these reasons by itself singles out genetic information from other types of health information, taken together, they provide a strong reason for regulation of use for insurance purposes. This information is of interest to third parties (primarily for financial reasons), and therefore is open to misuse and abuse. Potential misuse of sensitive genetic information can lead to a violation of fundamental human rights, such as breach of privacy, and unfair discrimination. In the context of insurance, misuse of genetic data may also lead to an individual being pushed out of insurance pools either as a result of being charged inordinately high premiums or being denied insurance cover. In particular, misuse of genetic information may lead to the further exclusion of persons with disabilities and elderly persons (who may be denied access to insurance or pushed out of insurance pools). It is also important to have regard to the ethical issues arising as a result of use of genetic predictive genetic data, for example the 'right not to know'  and the psychological consequences of knowing one's genetic make-up (for example, when genetic knowledge is not accompanied by the power to prevent or cure). In addition, the ultimate fear is that the use of genetic predictive data may lead to the creation of a genetic underclass, and the practice of genetic cleansing, not just in the insurance industry, but in other elements of society such as education, employment, political life, sport, and society in general. In light of the  unique nature of genetic information, the potential for abuse and the undesirable potential social implications, regulation of the use of genetic data for insurance purposes is therefore justified."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1,null,"Analysis of predictive genetic tests is often relatively easy so that the tests are performed on a larger scale with higher sensitivity. For many predictive genetic factors, the specificity is still relatively low. "]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"It is essential to regulate the use of genetic prediction data for insurance purposes."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"To give legal security."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"In France, Articles L.1141-1 et seq. of the Public Health Code, which are reproduced in Article L.133-1 of the Insurance Code, prohibit insurers from using the results of genetic tests even if they are forwarded to them by insurance applicants themselves.  Articles 225-1 to 225-3 of the Criminal Code specifically prohibit discrimination in access to goods and services on the grounds of a person’s state of health or genetic characteristics. Article 226-25 of the Criminal Code lays down penalties for cases in which genetic tests have been carried out for non-medical purposes without the prior consent of the person concerned."]

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["Activity sector","Country","Organisation","7. If so, should such regulation provide for:\n"]
[null,null,null,"a. prohibiting the use of such data for insurance purposes?",null,null,"b. making such use subject to specific conditions based, inter alia, on the predictive value of the results of the test in question and/or the type of risk covered?",null,null,"c. another approach?"]
[null,null,null,"YES","NO","Comments (if any)","YES","NO","Comments (if any)","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,"It relates to the probable onset of a condition which might never manifest itself (except in extremely rare monogenic diseases). Most diseases are multi-factorial, the predictive value of genetic tests is variable and the onset of most diseases involves a combination of genetic and environmental factors. Moreover, the scientific and clinical basis of genetic tests is not always clear and often of limited validity and the way that the findings are interpreted is questionable (i.e. it depends on the ability to understand and draw correct assumptions about the implications of the results; possible tendency to give disproportionate weight to such results in isolation and at the exclusion of other information; neglect of environmental factors etc.). ",null,1,"It would not be sufficient to just impose restrictions because once the companies have the information, it would be on a person's file and it might affect other decisions about future insurance. There is no guarantee as to how it would be used.","No."]
["Patients","Europe","Autism-Europe",1,null," The predictive value of genetic tests in relation to the development of diseases is extremely variable and limited, mainly when predictivity is exclusively based on a genetic dimension."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,null,1,null,"See our reply to the first part of question 7"]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,null,null,1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"As long as the validity of these tests is debatable, they should not be used for insurance purposes.",null,1]
["Consumers","France","Union nationale des associations familiales (UNAF)",1,null,null,null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"The BdV advocates a total prohibition on using any predictive genetic data. The future interpretation of any data  existing today can not be anticipated. Any kind of genetic data, with positive or negative impact on the medical state of the applicant, will have a negative consequence on at least one of his possible insurance covers.  ",null,1,null,"The German law provides maximum limits from which on the use is permitted. The BdV advocates at least an increase of these limits (for single payments from 300.000 to 1.000.000 Euro and for pension payments from 30.000 to 100.000 Euro per year). "]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,"Insurance companies can pursue their economic interests through means that are much less likely to undermine fundamental rights such as actuarial calculations which mutualise risks among all the people being insured.",null,1,"The ban on the use of genetic predictive tests should be general.  "]
["Insurance","Netherlands","Achmea",null,1,"Solidarity works only if adverse selection is restricted to acceptable levels. A general prohibition would enable a small group of high risk applicants to insure  for exorbitant high sums, at the (financial) expense of the community. The realization of solidarity would become financially impossible. Prohibition should always be subject to specific conditions. ",1,null,"The predictive value is a theoretical concept that is only valid in controlled clinical settings, where prevalence and disease-spectrum can be known. In a screening setting with much adverse selection, both prevalence and disease-spectrum are unknown, uncontrollable and highly variable. In part the same is true for Bayesian concepts like sensitivity and specificity when it comes to disease-spectrum (contrary to the suggestions made in (DH-BIO/INF(2012)1, paras 106-107). Predictivity can never be validated in underwriting. ","Conditional prohibition, e.g. sums insured, total sum insured. "]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"Solidarity works only if adverse selection is restricted to acceptable levels. A general prohibition would enable a small group of high risk applicants to insure  for exorbitant high sums, at the (financial) expense of the community. The realization of solidarity would become financially impossible. Prohibition should always be subject to specific conditions. ",1,null,"The predictive value is a theoretical concept that is only valid in controlled clinical settings, where prevalence and disease spectrum can be known. In a screening setting with much adverse selection, both prevalence and disease spectrum are unknown, uncontrollable and highly variable. In part the same is true for Bayesian concepts like sensitivity and specificity when it comes to disease spectrum (contrary to the suggestions made in (DH-BIO/INF(2012)1, paras 106-107). Predictivity can never be validated in underwriting. ","Conditional prohibition, e.g. sums insured, total sum insured. "]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"Prohibiting the use of not very important genetic data.",1,null,null,"Perhaps a list for which kind of tests insurers can ask; has to be regularly updated of course."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Genetic information can have future use in predicting risk, just like many traditional factors do now. Insurers must have the same access to genetic information that predicts risk as they now do to all the other medical information that predicts risk. There is no rational reason why genetic information should be treated any differently for insurance purposes.",null,1,"This is interference by an outside agency in the conduct of commercial business that impairs the integrity of the business being conducted. Insurers already are very concerned with making sure that the predictive value of a test is worth the cost and acceptance of the test to its applicants. There is no need for an outside agency to duplicate or interfere with this effort by insurers.  "]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"As detailed above, regulation can take many forms and this should remain a decision based upon specific member states' needs and experiences. We do not agree with an outright prohibition, which does not account for changes in science or for the different approaches that are working well.",null,null,"Insurers assess all health information with considerable care and fairness. If the value of any test lacks significance then little/no value would be placed upon such results by the insurer. Through effective pooling of risks, evidence based research in insurance pricing and risk assessment, insurers only use data where the significance has been demonstrated.","Please refer to our letter (in the General Comments section), which sets out the approach we follow in the UK."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"A general prohibition would create discrimination by enabling a small group of high risk applicants to arrange for exorbitant high sums insured, at the (financial) expense of all other applicants. As private insurance works on the principle of equivalence somebody has to pay these additional expenses, i.e. the insured community, which would make insurance cover for all more expensive and in the worst case would initiate a vicious circle. Prohibition is only possible subject to specific conditions. ",null,null,"The type of risk and the sum insured - e.g. coupled to the average price of a house. The predicative values of test are subject to the \"spectrum\" of disease. Contrary to the suggestions in 106 and 107: the sensitivity is an unreliable measure of validity as it depends on the disease spectrum, which may vary much depending on the circumstances. Therefore, the predictivity should not be used as a condition. "]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Any restriction on underwriting practice requires a careful balancing act to ensure that the restriction itself is not abused for major financial gain by an individual. Limits are therefore usually required linked to the purpose of insurance, such as the purchase of primary place of residence and the sum insured, which is also product and market specific. The genetic test definition used in Chapter 2 is too broad and includes any test that can give information on an inherited condition. For this to work in a legislation the definition would have to be limited to predictive DNA analysis only. The expression profiles of RNA, protein or other biomarkers reflect a current status quo that can be influenced by environmental factors and thus can change over time. Also including them would make it very hard to distinguish genetic from non-genetic tests.",null,1,"The predictive value of a test is of course dependent on the pre-test probability of getting a positive test result, something which varies from case to case, so one should be wary of any legislative limitation which failed to take account of this per patient variability. Most markets already have detailed disability discrimination type legislation so further regulation would be unnecessary, complex and potentially contradictory to local laws. As already indicated, such restrictions would need to be product and sum insured specific, with these varying across countries; what would be regarded as a reasonable amount in one country would be considered extremely high in another due to different average incomes and average and maximum insurance amounts.","Genetic testing is increasing in type and frequency, so any restriction needs to be limited in time, or it will require frequent changes, which is difficult if done in a legislative format. The current per market solutions in place seem to have been very successful in preventing real problems, and so further intervention would not appear necessary. "]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"The uncertainties of this type of diagnosis (DH-BIO/INF(2012)1, page 18, para 89). Risk of discrimination on the basis of a future state of health which cannot be established with 100% certainty. Furthermore, everyone has the right not to know the outcome of such tests. Their use should not therefore be permitted in the insurance field. ",null,1,"No use.","No."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1,null,null,null,1]
["Medical professionals","Luxembourg","Collège Médical",1,null,"This regulation should describe any exceptional circumstances in which genetic data can be used for insurance purposes. Rare single-gene disorders that cannot be treated: risk of discrimination against applicants and their families. ",1,1,"Validity of variable tests."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",null,1,"Complete prohibition is unrealistic.  In fact, a predictive test that provides for a reduction of risk could be beneficial  to the individual, particularly in situations where there is no provision for minimum required insurability. ",1,null,"The use of genetic predictive data would need to be tightly constrained, and subject to precise clinical interpretation.  Genetic testing information, and particularly predictive test information, is complicated and interpretation is complex.  To rely on test information without appropriate context would lead to inaccurate and therefore inappropriate underwriting.  New technologies often lead to significant ambiguity (such as variants of unknown significance), and can often provide information unrelated to the condition in question.  Such results may be uninterpretable, and therefore inappropriate to release for the purposes of insurance underwriting.  ","In the context of predictive data and tests, there would be greater equity for applicants and insurers with a minimum insurable base level below which the inclusion of any genetic predictive information would be prohibited.   If further coverage is requested by the applicant, then application of the insurer's underwriting policies would be implemented."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,"With the exception of violation of information equilibrium among insurer and applicant, the so called \"adverse selection\".",null,1,null,"Contracted value."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",null,null,null,1]
["Geneticists","United Kingdom","PHG Foundation ",null,1,null,1]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,null,null,1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities",1,null,"See our reply to the first part of question 7.",1,null,"Many predictive genetic tests determine the presence or absence of a genetic mutation but do not provide information on age of onset or severity of future disease. Some gene mutation carriers may remain unaffected."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"Prohibition is the best option for standard insurances. Then the only questions asked should be about life habits (smoking, drinking etc.) and physical data (height, weight, blood pressure etc.). When the applicant asks for a non-standard insurance with a very high return in case of disease/death, it must be allowed to ask questions about well-known family conditions, cause of death of first degree relatives and if genetic testing has taken place.",null,1,"It may be appropriate to allow more questions for critical illness insurance than for life or health insurance.  ","Genetic testing can only be asked about by the insurance company when a non-standard high-return insurance is asked for, and there is reason to believe that this request is motivated by genetic knowledge on the part of the applicant. However, an insurance company can never require genetic testing to be undertaken. The predictive value of genetic tests, if undertaken, must be beyond doubt, i.e. scientifically and (formally or undoubtedly) clinically validated."]
["Universities","Hungary","Central European University, Budapest",1,null,"In case of predictive genetic tests the prohibition should be the main rule (in the case of general life insurance). However the pre-existing conditions, asking for  already known  genetic test results should not be banned. ",null,null,null,"I think only predictive genetic tests without therapeutic value to  the tested should be banned."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"Insurers may potentially use genetic information primarily for financial advantage and as a tool for selecting what they perceive to be low risk customers.  This may result in unfair discrimination, and individuals being pushed out of insurance pools through being denied insurance cover or being charged inordinately high premiums. This is undesirable from the perspective of the social purpose of insurance and fundamental human rights, such as the right not to be discriminated against, the right to privacy, integrity and inclusion in the community (as well as a range of other rights contained in the CRPD).  There is also the risk of creating a potentially disastrous genetic underclass and relegating genetically undesirable individuals, if this area is not appropriately regulated. In addition, it is necessary to refer to the accuracy of genetic testing and the popular perception of such testing.  The common misperception that genetic tests can predict completely and accurately whether a person will develop a genetic disease can cause problems with third party use of genetic information and genetic test results. Insurance companies may misinterpret and misuse genetic test results to weed out persons according to their perceived health risks based on a common misunderstanding that having a genetic trait is the same as having the actual disease or condition.   In overestimating the predictive value and accuracy of genetic testing, unfair genetic discrimination can occur simply because of insurer ignorance in granting statistical validity to genomic data that is not sufficiently precise for that purpose.",null,1,"Although potentially justifiable from the economic perspective of insurance companies, it is more challenging to justify use of predictive genetic data from a social perspective and in consideration of the need to provide access to insurance and health care. Even if the use of genetic test results (based on the positive predictive value of these tests) was permitted, this would be undesirable as it may result in individuals being denied insurance cover or being charged a prohibitively high premium.  More importantly, use of predictive genetic data may be undesirable, in light of the potential for abuse, and ultimately the creation of a genetic underclass, with disastrous societal consequences. It is necessary to refer to the accuracy of genetic testing and the popular perception of such testing.  The common misperception is that genetic tests can predict completely and accurately whether a person will develop a genetic disease can cause problems with third party use of genetic information and genetic test results.  Insurance companies may misinterpret and misuse genetic test results to weed out persons according to their perceived health risks based on a common misunderstanding that having a genetic trait is the same as having the actual disease or condition.   In overestimating the predictive value and accuracy of genetic testing, unfair genetic discrimination can occur simply because of insurer ignorance in granting statistical validity to genomic data that is not sufficiently precise for that purpose.  In addition, a distinction must be made between monogenetic conditions, and multifactorial genetic conditions.  Most genetic conditions are multifactorial, whereby manifestation of the condition is a result of a complex interaction between genes and environment (for example, heart disease).  These genetic tests have limited predictive value in terms of whether the condition will manifest in an individual, the age of onset of the condition and the potential severity of the condition. It is only in the case of monogenetic genetic conditions that the onset and severity of the condition can be more accurately predicted (for example, Huntington’s disease). Generally when an individual tests positive for having the gene for Huntington's disease, the condition is likely to manifest by middle age. As regards the use of predictive genetic testing, there is also a risk that information may be disclosed concerning another health risk, which was not specifically sought initially by the insurance company, and could be used against the insurance applicant.","Another approach could provide for the favourable use of genetic information, to improve the insurability of an individual.  In certain cases,  it is submitted that genetic testing may improve the insurability of people who have problems obtaining insurance because of family history – for example, family history of Huntington’s disease, or breast cancer.  Arguably, while positive test results for a genetic condition may hinder someone’s insurance application, a negative test result may often make it possible for people who were previously uninsured to obtain insurance.  However, it is necessary to have regard to the predictive value of genetic test results in this regard.\n\n \n"]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1,null,"In general the Austrian Bioethics Commission is in favour of prohibiting these results for insurance purposes."]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",null,1,"For monogenic disorders, genetic data are very good predictors of the outcome of a person's health, as well as complex diseases (such as breast and colon cancer), for which robust scientific evidence is available. For some of these disorders, there are available treatments. Such data could be used for insurance purposes.",1,null,"Again, the matter is the nature of the condition (monogenic or multi-factorial). For multi-factorial disorders it is essential to take into account the true predictive value of the result. "]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"To avoid risks with respect to privacy and discrimination against the applicants.     ",1,null,"The genetic predictive data have to be subject to specific conditions, given the complexity of this type of analysis. Keep in mind the risks with respect to privacy and discrimination."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1]

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["Activity sector","Country","Organisation","8. Is the prohibition of the use of predictive genetic tests for insurance purposes as set out\nin Article 12 of the Convention on Human Rights and Biomedicine also relevant for non-genetic predictive examinations?\n[Article 12: \"Tests which are predictive of genetic diseases or which serve either to identify the subject as a  carrier of a gene responsible for a disease or to detect a genetic predisposition or susceptibility to a disease may be performed only for health purposes or for scientific research linked to health purposes, and subject to appropriate genetic counselling.\"]"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",null,1,"Insurers have to have some way to calculate risk. Whilst non-genetic predictive tests do not result in discrimination based on a person's genetic heritage/identity, some of the same concerns apply to non-genetic predictive testing. In addition, the possible link between a particular observed sign and a particular disease may be ambiguous and subject to interpretation. Rigorous control is therefore needed. "]
["Patients","Europe","Autism-Europe",1,null,"As in the case of  genetic tests, the use of non genetic predictive tests for insurance purposes may result in stigma and discrimination."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"In our view, the Convention on Human Rights and Biomedicine forms part of the instruments to protect fundamental rights which we regard as the absolute minimum to protect insurance customers."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"The term “non-genetic predictive examinations” covers all non-genetic practices. Potentially, it concerns an enormous number of procedures, all of which are extremely different. How, for instance, can a physical examination be placed on the same level as a medical imaging result. This is clearly impossible. We believe that authorising such practices, even partly, will make it impossible to control them in the future. There is far too high a risk that the practice will be completely exempt from any regulation. Lastly, in any case, the validity of such tests is disputed. It is legitimate therefore to question what purpose they serve. "]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"It should be noted that, as in the case of genetic tests, the results of non-genetic examinations in relation to the occurrence of the disease symptoms may greatly vary in their predictive value (DH-BIO/INF(2012)1, page 21, para 104). "]
["Unions","Europe","Confédération Européenne des Syndicats",1]
["Insurance","Netherlands","Achmea",null,1,"Avoidable risk factors, like life-style and risk factors that are unduly influenced by behaviour (including adherence to therapy) are the main subjects of underwriting. This makes subsidizing solidarity on the basis of voluntary, individual insurances possible. Prohibition would lead to an end of these insurances in most countries, to the detriment of many households. "]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"Avoidable risk factors, like life-style and risk factors that are unduly influenced by behaviour (including adherence to therapy) are the main subjects of underwriting. This makes subsidizing solidarity on the basis of voluntary, individual insurances possible. Prohibition would lead to an end of these insurances in most countries, to the detriment of many households. "]
["Insurance","Netherlands","Nationale Nederlanden/ING",null,1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"I disagree with the prohibition of the use of predictive genetic tests for insurance purposes.  Any interference in the determination of risk by an insurer degrades the integrity of the insurance contract.  Applicants who are not forthcoming with any knowledge about their risk impair the contractual agreement between themselves and their insurers.  Undue interference with this contractual agreement by outside agencies hurts the insurance industry and its future viability to serve the public."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"Article 12 states that: \"Tests which are predictive of genetic diseases or which serve either to identify the subject as a carrier of a gene responsible for a disease or to detect a genetic predisposition or susceptibility to a disease may be performed only for health purposes or for scientific research linked to health purposes, and subject to appropriate genetic counselling.\"\nOur first point is that, under the Concordat and Moratorium, insurers agree that customers will not be asked to, nor be put under pressure to, undergo a predictive genetic test to obtain insurance cover. This is achieved in many countries where no such regulation is in force.\nWe believe that the important principles are 1) the equal sharing of information between the applicant and the insurer, 2) the use of only relevant information and 3) that insurance is about the probabilities of risk. In terms of non-genetic predictive examinations, we note that predictive genetic tests are different from other types of predictive tests. Genetic tests are purely predictive, but in others predictive non-genetic tests, the abnormal pathological process will have started, albeit asymptomatically. The difference should be recognised, and we believe that insurers should be able to use non-genetic predictive tests where they are relevant. We do not agree with a prohibition."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"Insurers have to assess the risk in order to apply the best price based on this risk. Most of the non-genetic predictive examinations focus on data that result form life-style, behaviour-related and avoidable risk factors. Prohibition would lead to a complete end of underwriting and therefore of the existence of voluntary individual insurances in most countries.  "]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"As well as the major issue of definition, for example is a test for diabetes diagnostic or predictive (as most diabetics die of heart disease), any restriction on non-genetic predictive tests would have a major impact on the overall cost of insurance, the availability of products, and therefore the ability of the public to insure themselves against unknown risks. The non-genetic tests used by insurers are widely used in clinical medicine and are important factors in health assessment and are therefore extremely relevant for insurers. Most common predictive tests used by insurers such as cholesterol and blood pressure checks are used daily by doctors to screen their patients, in employee check ups, or independent well person checks. Insurers offering these same tests, usually without cost to the customer, adds to the effectiveness of this screening and can serve a valuable role in identifying a treatable illness before it is diagnosed, with significant benefit for the individual in terms of quality and quantity of life and also for long-term health care costs.    "]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"The predictive value of the results of such examinations varies greatly (DH-BIO/INF(2012)1, pages 20-21, para 102-104). In some cases treatment may be proposed to the person concerned and the result can be beneficial. There is too much uncertainty about the outcome of these non-genetic tests."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",null,1,"An insurer cannot be prohibited from knowing, for instance, if a patient has diabetes or high cholesterol. Insurers must be able to assess medical risks.\nHowever, this should not have the effect of depriving an applicant with a particular condition of the possibility of being insured.\nThe authorisation of non-genetic predictive tests can raise a number of problems including: a) the right of insurance applicants not to know whether they have a particular illness; b) as a result of the desire to protect the confidentiality of such data, the applicant may be denied the chance to be insured. These are issues which go beyond the current debate, to which the solution may be a compromise between national solidarity and mutualisation."]
["Medical professionals","Luxembourg","Collège Médical",1,1,"The value of predictive tests can vary enormously."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",null,1,"Such examinations cannot be strictly defined as predictive.  As described on DH-BIO/INF(2012)1, page 21, para 109 a non-genetic predictive test identifies elements requiring that a  biological process has already started. Therefore a prohibition on the use of these examination results for the underwriting process is likely not appropriate. "]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",null,1,"This is a political issue: if you accept and vote for the right to informational self-determination, \"everybody is the architect of his own fortune\" in the non-medical application of genetic predictive tests."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"We argue that the positive predictive value of a test should dictate the degree of regulation to which it is exposed, rather than whether the test is 'genetic' or 'non-genetic'. In all cases, there needs to be transparency about the scientific and clinical utility of the test (and the positive predictive value it confers). If a test is only of marginal positive predictive value, and that lack of utility is evident to the potential consumer/user, then additional regulation is not justified."]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",null,1,"There may be a difference between these two types of tests. Predictive genetic tests may give positive results in unaffected individuals; other tests are more likely to be directly detecting clinical effects present due to the disease process."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"A clinical examination can be as \"long-term predictive\" as a DNA test in some cases, e.g. finding cataract in a family with myotonic dystrophy or macrocephaly in a family with Cowden syndrome."]
["Universities","Hungary","Central European University, Budapest",1,null,"To some extent yes, however genetic data often possess other characteristics, such as inter-generational elements (revealing data relevant to other family members, as well.)"]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"This question is dependent upon the interpretation of Article 12 of the Convention on Human Rights and Biomedicine.  It further depends on the type of test in question and the information it can reveal, and whether such tests are predictive of genetic disease or identify the individual as a carrier of a gene responsible for a genetic disease.   "]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"Both genetic and non-genetic examinations serve the same purpose, i.e. prediction. "]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"Other kinds of health information could also be considered predictive, and provide information on the possible development of a future disease. And this issue should be taken account."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"There is a need to regulate additional examinations, some of which may be predictive."]

{"sheet":"Q9","index":12,"n_rows":39,"n_cols":10,"rows_kept":39,"cut":false,"hidden":false,"merged":[[28,9,28,11],[29,9,29,11],[17,3,17,11],[37,9,37,11],[38,9,38,11],[31,9,31,11],[32,3,32,11],[34,9,34,11],[36,9,36,11],[33,9,33,11],[35,3,35,11],[4,9,4,11],[5,9,5,11],[6,9,6,11],[7,9,7,11],[30,9,30,11],[18,9,18,11],[19,9,19,11],[14,3,14,11],[21,9,21,11],[22,9,22,11],[23,9,23,11],[24,3,24,11],[25,9,25,11],[26,9,26,11],[20,9,20,11],[27,9,27,11],[16,9,16,11],[10,9,10,11],[8,9,8,11],[9,9,9,11],[15,9,15,11],[11,9,11,11],[12,9,12,11],[13,9,13,11],[0,0,2,0],[0,1,2,1],[0,2,2,2],[3,9,3,11],[0,3,0,11],[1,3,1,5],[1,6,1,8],[1,9,1,11],[2,9,2,11]]}
["Organisation","Country","Activity sector","9. In this context, which approach for non-genetic predictive tests would be preferable\n"]
[null,null,null,"a. A global one applicable to all non-genetic predictive tests?",null,null,"b. A specific one depending on the test in question?",null,null,"c. In the latter case, according to what criteria?"]
[null,null,null,"YES","NO","Comments (if any)","YES","NO","Comments (if any)","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",null,1,null,1,null,"Based on the predictive value of the test and whether there are other criteria which might contribute towards the calculation of a specific risk. ","The relationship between observable signs and specific diseases may vary considerably. In some cases, there may be firm evidence of an underlying causal relationship and a high degree of probability of the condition occurring in the person's lifetime, whereas in other cases, there might only be a weak relationship, one which can be explained by other factors or a low probability of the disease occurring. Consequently, the use of such tests should only be used if they can be backed up by sound scientific data and preferably be used in conjunction with the identification of other factors which might increase or reduce the probable risk."]
["Patients","Europe","Autism-Europe",1,null,"As in the case of genetic tests, the predictive value  of non-genetic examinations in relation to the occurrence of the disease  may greatly vary."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",null,null,"As the organisation or use of non-genetic predictive tests is not always properly supervised, considerable caution should be exercised.",null,null,"Idem.","Idem."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,null,null,1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,null,null,1,"Absolutely not."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1,null,null,null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"This depends particularly on the specifically ascertainable level of correlation between the sign observed and the disease in question (DH-BIO/INF(2012)1, page 21, para 104).",null,1]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,null,null,1]
["Insurance","Netherlands","Achmea",null,1,"This would lead to the end of voluntary individual insurances. ",1,null,"For some tests, exceptions could be made, if – and only if – the disorder is not self inflicted, nor aggravated. ","Disorders: not manifest, not self inflicted or the result of life-style or behaviour. Risk factors: could or should the applicant have known that his or her conduct would lead to a higher risk (e.g. smoking, STD, contamination by IVDU - intravenous drug use)? All: the above applies only to lower sums insured. "]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"This would lead to the end of voluntary individual insurances. ",null,1,"Rules should not be made for every test separately, but only for some exceptional tests. ","Disorders: not manifest, not self inflicted or the result of life-style or behaviour. Risk factors: could or should the applicant have known that his or her conduct would lead to a higher risk (e.g. smoking, STD, contamination by IVDU - intravenous drug use)? All: the above applies only to lower sums insured. "]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"Not too specific to avoid bureaucracy."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Leave insurance testing alone.",null,1,"Leave insurance testing alone."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"Further to our comments made in reply to question 8, Member States have different approaches already established and, in some cases, detailed by law. Individual Member States should be able to apply the approach which most closely matches their individual needs and experiences. We believe that this is likely to be achieved best through consensus, rather than a general prohibition. We are also concerned that the unintended consequence of a broad EU approach would be to limit the choices of consumers at national level to seek the cover that they feel appropriate (though the State, insurance, savings, etc.).",null,null,"As indicated in our reply to question 8, we feel it is unnecessary to extend the prohibition set out in Article 12. We note that very few countries have chosen to restrict non-genetic predictive tests.","Not applicable."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"No regulation for non-genetic predictive tests at all.",null,1,"No regulation for non-genetic predictive tests at all.","Avoidability and reproachability. Could or should the applicant have avoided the risk factor (e.g. smoking, STD, contamination by IVDU - intravenous drug use)? Again: never any prohibition for larger sums insured."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Such restrictions are unnecessary and would significantly impact the cost of any insurance products voluntarily subscribed.",null,1,"No approach necessary."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,null,null,1]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",null,1,null,1,null,null,"According to the medical history declared by the applicant, clinical examinations could be conceivable."]
["Medical professionals","Luxembourg","Collège Médical",null,1,null,1,1,null,"Depending on the relevance and the importance of these tests for assessing the health risk concerned."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",null,null,"The genetic counselling profession, in general, does not hold subject matter expertise extending to the relevance of non-genetic \"predictive\" testing.  Therefore we are unable to comment.  ",null,null,"Uncertain.","Uncertain."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]","These issues have not been discussed. Good point to think about it!"]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",null,1,"For clarity, a regulatory framework could apply to all non-genetic predictive tests, but only be enforceable in relation to a small subset as below. Good regulation must be enforceable and feasible, otherwise regulation loses credibility- and may be flouted - so if this approach is adopted, thought needs to be given as to how it could possibly be enforced.",1,null,null,"As above, the criteria would depend mostly upon the positive predictive value of the test but should also take into account it's potential scientific and clinical validity and utility as above. There may also need to be additional provision to identify those tests where a positive result might be particularly sensitive. This might be through a combination of factors including the severity of the condition; whether the condition is medically actionable through treatment or some other intervention including prevention, screening or management; and the imminence of symptoms occurring. Sensitivity might arise from other factors, particularly if a non-genetic predictive test is for a condition that is linked to a cultural or ethnic group. "]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,null,null,1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities",null,1,"There will be variability between non-genetic tests depending on the disorder being tested for. Some non-genetic tests will imply affected status, others may imply only possible future symptomatology. ",1,null,"See our reply to question 9.a.","Clinical significance of the test and its result."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,null,null,1]
["Universities","Hungary","Central European University, Budapest",null,1,"There are predictive tests which have therapeutic value, so the tested patient may change life style and then with a better test result may return to the insurance company for claiming a better fee. Right not to know should be respected in case of serious, inheritable conditions, especially where there is no available treatment or prevention.",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",null,1,"In consideration of the fact that non-genetic predictive tests vary in terms of what they test for and their predictive value, it is thought that a global approach in these circumstances would not be appropriate.",1,null,"In light of the variety of different tests available, the difference in medical and predictive value and the different uses of such tests in a wide range of scenarios, it is submitted that a specific approach dependent upon the test in question is preferable.  ","According to the type of test in question and the use of such test, the information such test reveals and the predictive value of such tests."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",null,null,null,1,null,null,"Reliability of the test, type of disease."]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1,null,null,1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",null,null,null,1,null,"Yes, depending on the true predictive value of the test in question.","The true predictive value of the test."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"Because more guarantees are offered."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,null,null,1]

{"sheet":"Q10","index":13,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","10. Where the law allows for the use, for insurance purposes, of existing data resulting from predictive genetic tests, this should be restricted to data derived from tests which meet the criteria of scientific validity, clinical validity and positive predictive value (PPV) and are used in clinical practice. Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,"Whilst certain predictive genetic tests may be useful in the context of research and result in their further refinement, only those which have been scientifically proven to be valid and are used in clinical practice should be used by insurance companies. Also, those which are available commercially but not used in clinical practice should not be used. "]
["Patients","Europe","Autism-Europe",1,null,"The use of other non-reliable data could lead to misinterpretation or arbitrary conclusions."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"Provided that these criteria are generally recognised."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"Insurers must justify additional premiums and hence show that the insurance applicant’s genetic heritage reveals that there is a major risk that he or she will develop an illness in the future. Consequently, insurance applicants must be able to contest these results if they consider them to be mistaken. For this purpose, they must be able to call on an independent doctor to confirm or contradict the test results. The insurance sector must therefore comply with the practices authorised by health professionals."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1]
["Unions","Europe","Confédération Européenne des Syndicats",null,1,"National legislation which authorises the use of predictive genetic tests in the insurance field should be revised."]
["Insurance","Netherlands","Achmea",null,1,"See our answers to questions 3.a and 7.b: clinical concepts are of no use and obsolete. Insurance underwriting is diagnostic and prognostic testing in a specific screening situation with adverse selection. The positive predictive value can never be validated in a situation with unknown prevalence and unknown disease-spectrum. The first step in underwriting (questionnaire) is one of high sensitivity and should therefore have a high negative predictive value (the NPV, which is worth much more to the applicant than the PPV!). The second step in underwriting (assessment of collected extra medical data) should be very specific. This step will have a high PPV automatically, because the prevalence will have been raised enormously by the first step in underwriting and because the results of many tests are combined to enhance specificity. Demanding a high PPV for an individual test is completely misplaced in this setting."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"See our answers to questions 3.a and 7.b: clinical concepts are of no use and obsolete. Insurance underwriting is diagnostic and prognostic testing in a specific screening situation with adverse selection. The positive predictive value can never be validated in a situation with unknown prevalence and unknown disease-spectrum. The first step in underwriting (questionnaire) is one of high sensitivity and should therefore have a high negative predictive value (the NPV, which is worth much more to the applicant than the PPV!). The second step in underwriting (assessment of collected extra medical data) should be very specific. This step will have a high PPV automatically, because the prevalence will have been raised enormously by the first step in underwriting and because the results of many tests are combined to enhance specificity. Demanding a high PPV for an individual test is completely misplaced in this setting."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"Stricter requirements than for common practice are ok."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Clinical practice is different than insurance risk assessment, and the two should not be confused. Insurance methods and goals are far more appropriate to evaluate the prospective use and interpretation of genetic tests, not clinical practice methods or goals."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"Insurance risk selection only uses data where the results are valid and significant. Many Member States across Europe already have their own detailed Disability Discrimination legislation and insurers must only use data which is actuarially relevant and on which it is reasonable to rely. Use in clinical practice would be a primary example of how insurers would demonstrate relevance and validity. In the UK, the Moratorium restricts the predictive genetic test results that insurers can use. Currently, the only test that an insurer can use (subject to other restrictions on amount of cover and relevant product types) is a test for Huntington's Disease. The Moratorium means that consumers with a predictive genetic test result for Huntington's Disease are not required to disclose that result to insurers unless they are seeking very high levels of cover (in 2007, 97% of relevant policies were under the financial limits of the Moratorium, which shows that consumers can gain significant levels of cover without disclosing the predictive genetic test result). For all other conditions, consumers do not have to disclose their predictive test results. As part of the agreement with the Government, if insurers want to use another predictive genetic test for a condition, an application must be made to an independent panel of experts. The application must reference clinical data and research that demonstrate, for instance, that the condition is high penetrance and that the gene and associated disease is listed on the UK National Health System's Directory of Genetic Testing. The application would be robustly reviewed by the panel to ensure scientific and clinical validity, positive predictive value and suitability of use."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"Again, clinical validity is first of all based on validity in clinical practice; instead, public health and screening should be used as reference. Secondly, validity depends on disease-spectrum; positive predictive value is dependent on prevalence and disease-spectrum. The prevalence is unknown, because self-selection of high risk applicants might increase prevalence beyond clinical experience. One cannot define criteria on the basis of unknown prevalence."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"As insurers only require access to results which have been carried out in a medical context, the tests are already subject to normal medical protocols. The industry would anyway not make use of data which are not clinically validated."]
["Medical professionals","France","Académie nationale de médecine (France)",null,1,"This is not the case in France."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"In the context of insurability, it is inappropriate and irresponsible to consider results of tests or investigations that do not meet the above standards. "]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"We suggest that the decision for insurers to 'use' predictive genetic tests has three discrete elements:\na) Whether the available evidence on the scientific and clinical validity and utility of a particular test for a particular purpose constitutes a robust enough evidence base for it to be used for secondary uses such as insurance. This decision should be made by an independent national or international advisory body;\nb) Whether a particular insurance company choses to request and then use predictive test results for a particular test/purpose: a decision to be made by each insurer guided by appropriate industry guidelines;\nc) Any ambiguities in interpretation of test results that are disclosed: referral should be to medically trained experts within each company."]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"Using test results of low validity, predictivity and PPV would make underwriting less validated which is not in the interest of the applicant or the underwriter. "]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"We are not sure about the ‘and are used in clinical practice’ limitation. It’s debatable what that means, and surely the relevant thing is the validity and PPV of the test, not what use is made of it in a particular country at a particular time."]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"Many genetic tests yield limited and uncertain predictive value (and only reveal an increased probability of developing a certain condition). If genetic test results are even to be considered for use for insurance purposes, the scientific and predictive value must be relatively certain and accurate, otherwise such data can be misinterpreted, its value overestimated, and open to misuse. In particular, as regards direct-to-consumer genetic testing, the scientific validity may be questionable, and the use of these tests needs to be carefully monitored. The criteria of scientific validity, clinical validity and positive predictive value are therefore in accordance with the fundamental insurance principles of reliability and relevance."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"Definitely."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"Predictive genetic tests should be used when they meet the criteria of scientific validity, clinical validity and positive predictive value. "]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"Only the results of tests which meet the criteria of scientific and clinical validity should be taken into account in keeping with the principle of relevance."]

{"sheet":"Q11","index":14,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,3,0,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","11. Should the use for insurance purposes of predictive data resulting from a test on which a research is carried out be prohibited?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,"Using such data could interfere with people's willingness to take part in research. This could jeopardize scientific research and this would be detrimental to society. Also, it would put people who had taken part in research involving the use of predictive testing at a disadvantage in the insurance market. Data should only be used for the purpose for which it was collected and to which the subject consented. Even if its use were dependent on further consent being given, a person may feel obliged to give additional consent in order to have a chance of obtaining insurance. This would represent undue pressure which is not in keeping with the requirements for obtaining informed consent."]
["Patients","Europe","Autism-Europe",1,null,"Results of research tests are particularly subject to erroneous interpretations.  Isolated genetic  findings  deriving from a  genetic research are not necessarily meaningful for the assessment of the individual risk  and may be contradicted by subsequent studies."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"This is prohibited in Belgium. In any event the greatest possible caution should be exercised with regard to people who have taken part in such research. It is not acceptable for these results to be used for purposes other than the research itself."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"Given how unreliable such tests are, they should not be authorised. "]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1]
["Unions","Europe","Confédération Européenne des Syndicats",1]
["Insurance","Netherlands","Achmea",null,1,"Access to insurances and participation in research should not interfere with each other. This means that applicants should not fear that the results of research will be used for insurances. But this also means that people should not participate in research because it would give them free access to insurances. Researchers should not misuse the fear of insurance applicants. The “midway” solution would be to prohibit the use of predictive genetic data for insurances to situations where the disorders are not yet manifest and the sum insured is below a certain limit. For non-genetic predictive information, see our answer to question 8. "]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"Access to insurances and participation in research should not interfere with each other. This means that applicants should not fear that the results of research will be used for insurances. But this also means that people should not participate in research because it would give them free access to insurances. Researchers should not misuse the fear of insurance applicants. The “midway” solution would be to prohibit the use of predictive genetic data for insurances to situations where the disorders are not yet manifest and the sum insured is below a certain limit. For non-genetic predictive information, see our answer to question 8. "]
["Insurance","Netherlands","Nationale Nederlanden/ING",null,1,"If the above mentioned requirements are met, predictive genetic data are as useful as non-genetic data."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"If the research in question is of use for insurance risk assessment purposes, it should be allowed to be used."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"Individuals should be encouraged to take part in research. Tests in the research setting are undertaken without regard to their meaning for people at an individual level. In addition, the numbers involved are not likely to be significant in comparison to the numbers in insurance pools. We do not agree that a prohibition is required to ensure this principle. In the UK, the Concordat and Moratorium specifically refer to the fact that customers will not be asked to disclose any predictive or diagnostic genetic test results acquired as part of clinical research.\nWe make the additional point that the concerns of individuals about access to insurance should not be abused. We encourage researchers and clinicians to engage with this topic, so that they can appropriately respond to these concerns. In the UK, we encourage clinicians to advise patients about the Concordat and Moratorium and our consumer guidance."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"This depends on the research and on the insurance. Of course, the fear of loss of access to insurances should not interfere with the research participation. But this also means that research participation should not automatically provide a safe way to obtain insurance cover that would otherwise be unobtainable; otherwise people might participate against their will only to obtain an insurance cover. Scientists should not misuse people's fears."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Insurers only require symmetry of information; research results of which the patient is not aware are not, and should not be, used by the insurer. Where such research has been carried out and the patient has been informed of their own result, however, the insurer should also be made aware, as otherwise the whole base of risk selection, which requires equal knowledge of risk between insurer and person to be insured, fails. "]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"Tests during research or incomplete tests introduce too much uncertainty."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"It would be inappropriate to use the results of such a test for insurance purposes unless standards of scientific validity, clinical validity, PPV and relevance are met.  "]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1,1]
["Geneticists","United Kingdom","PHG Foundation ",null,null,"This question seems strangely worded. It is not clear whether this question is intended to address the lack of an evidence base that may apply to predictive tests performed in a research setting; the lack of quality assurance (i.e. lack of clinical validation) which may be associated with the process for carrying out tests in research settings, or the lack of competences of the staff involved in the process which might compromise test reliability. All may reduce the reliability of a test result generated within a research setting and for these reasons extra caution might be needed if results are to be used by third parties such as insurers. "]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities",1,null,"Only validated clinical tests should be used. Use of data obtained from research could have a significantly detrimental impact on progress of future research efforts, detrimental to patients."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"In general such data is of high uncertainty and still not verified in a clinical setting."]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"In order to use information (about an individual's health) for insurance purposes, it is necessary to obtain the consent of the individual, to maintain privacy and uphold data protection legislation. Although an individual may have consented to the use of their health data for research purposes, this consent cannot be used to justify use of the information for insurance underwriting purposes. Consent must be voluntarily given and fully informed. In addition, although medical research makes a valuable contribution to advancing medicine and understanding disease, it is nevertheless uncertain in terms of predictive value and its use for insurance purposes is not appropriate."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"Data are subject to change and they must be replicated and confirmed  by independent research studies."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"Because the aims of the research project have no such purpose. The use of the information should in any case be included in the informed consent for research. The scientific and clinical validity of the genetic test must be well-established."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"In keeping with the principle of legitimate purpose, the use for insurance purposes of predictive data resulting from a test on which research is to be carried out should be prohibited."]

{"sheet":"Q12","index":15,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[16,3,16,5],[13,3,13,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5]]}
["Activity sector","Country","Organisation","12. Should the use for insurance purposes of any predictive data obtained in the context of\nresearch activities be prohibited?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,"The same argument applies as in our response to question 11. "]
["Patients","Europe","Autism-Europe",1,null,"Predictive genetic data collected for research purposes are not sufficiently specific for prediction of disease occurrence and may  provide an inaccurate perception of the risk at individual level."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"See our response to question 11. "]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"Some test/examination results are neither relevant for the risk evaluation of a disease, nor for insurance purposes (e.g. test results for multi-factorial diseases). Even if such results were to become significant, they should only be used in conjunction with other factors which point to a risk (e.g. weight, diet, blood pressure, habits, etc.). In the context of insurance underwriting, relevance requires that there be a clear, well-established link between the health data gathered by the insurer (whether by means of a questionnaire or a medical examination) and the risk to be covered (DH-BIO/INF(2012)1, page 22, para 113)."]
["Unions","Europe","Confédération Européenne des Syndicats",1]
["Insurance","Netherlands","Achmea",null,1,"Access to insurances and participation to research should not interfere with each other. This means that applicants should not fear that the results of research will be used for insurances. But this also means that people should not participate in research because it would give them free access to insurances. Researchers should not misuse the fear of insurance applicants. The “midway” solution would be to prohibit the use of predictive genetic data for insurances to situations where the disorders are not yet manifest and the sum insured is below a certain limit. For non-genetic predictive information, see our answer to question 8."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"Access to insurances and participation to research should not interfere with each other. This means that applicants should not fear that the results of research will be used for insurances. But this also means that people should not participate in research because it would give them free access to insurances. Researchers should not misuse the fear of insurance applicants. The “midway” solution would be to prohibit the use of predictive genetic data for insurances to situations where the disorders are not yet manifest and the sum insured is below a certain limit. For non-genetic predictive information, see our answer to question 8."]
["Insurance","Netherlands","Nationale Nederlanden/ING",null,1,"But only ask if you think the consequences are potentially very serious."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"If the research in question is of use for insurance risk assessment purposes, it should be allowed to be used."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"As in our response to question 11. This is a matter for individual Member States to consider based upon their needs and experiences. We do not agree with an outright legislative prohibition. Please also see our response to question 11."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"Again, researchers should not misuse people's fears. This question might be based on unethical presumptions."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Research results of which the patient is not aware are not, and should not be, used by the insurer. Where such research has been carried out and the patient informed of the result, however, the insurer should also be made aware. The industry should not make use of data which is not clinically validated."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"Research-related data. The same argument applies as in our response to question 11."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1,null,"In the research field, even though it is known that such data can contribute to the knowledge of a disease, it is difficult to make use of them at the experimental stage as a considerable amount of time needs to pass before the impact of such data can be assessed."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"It would be inappropriate to use the results of such a test for insurance purposes unless standards of scientific validity, clinical validity, PPV and relevance are met."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"There may be instances where predictive genetic tests in a research setting may generate robust results which are consistent with paragraph 10 above, such as identifying a familial breast cancer susceptibility as an incidental finding in a research study wholly unconnected with breast cancer. Normally confirmatory tests will be repeated within a clinical setting providing justifications for relying upon that information. The central question might be whether the regulatory environment should favour the insurer (who needs to have the relevant information in order to reach an informed commercial decision about whether or not to insure and for what premium) or the patient/participant - who might benefit from inconclusive or unconfirmed results not being disclosed more widely. The PHG Foundation supports a regulatory environment that is in favour of non-disclosure to insurers as a default, on the basis that within the UK, the size of the market for health insurance where this issues currently arises, is comparatively small. Such a policy is probably easier to police than the alternatives."]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"See our response to question 11. In addition, research data are by its nature not validated and cannot be used outside controlled environments, and not for true prediction of a person's future health risks."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1]
["Universities","Hungary","Central European University, Budapest",1,null,"In general it should be prohibited. However, the applicant may consent to its use."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"It should be clarified for what purpose the predictive data is to be used for. It is necessary to obtain an individual's consent for any collection and processing of sensitive data."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"For the same reason as in our response to question 11."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"In keeping with the principle of legitimate purpose, the use for insurance purposes of predictive data resulting from a test on which research is to be carried out should be prohibited."]

{"sheet":"Q13","index":16,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","13. While family history may sometimes provide information on the impact of environmental factors, its predictive value is very limited where genetic alterations are concerned. Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",null,null,"This seems to be a statement, not a proposal. Family history should not be the sole criterion for making a decision about the impact of environmental factors as there are differences even within families and cases where blood relatives have simply lived apart (e.g. boarding schools, parents not present, exposure of some family members to different environmental factors)."]
["Patients","Europe","Autism-Europe",1,null,"Several factors other than the gene alteration may contribute to the development of a  disease."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"Family history can only be taken into account in the light of medical developments since past events or with a view to developments that may occur in the future."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",null,null,"Our association does not have enough expertise in this field to answer the question properly. "]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1]
["Unions","Europe","Confédération Européenne des Syndicats",1]
["Insurance","Netherlands","Achmea",null,1,"Again, the predictive value cannot be assessed without knowledge of the prevalence and disease-spectrum. So this “question” is scientifically incorrect – and it isn't a proposal. The family history is normally regarded as an important data source in clinical situations and in this questionnaire the clinical situation is (unjustly) taken as reference. So, does this “proposal” mean that the use of the family history is also invalid in a clinical setting? Not many clinicians would agree with you. In insurance underwriting, the family history should only be used in step 2 (assessment of all available medical data to establish the individual risk of the applicant); but not in step 1 (questionnaire) unless high sums have been insured. "]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"Again, the predictive value cannot be assessed without knowledge of the prevalence and disease-spectrum. So this “question” is scientifically incorrect – and it isn't a proposal. The family history is normally regarded as an important data source in clinical situations and in this questionnaire the clinical situation is (unjustly) taken as reference. So, does this “proposal” mean that the use of the family history is also invalid in a clinical setting? Not many clinicians would agree with you. Likewise, the insurance doctors should also be able to use this information."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"Very probably not potentially very important for risk estimation."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"This is not a true statement, according to the medical literature."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"The relevance of family history in relation to life and health insurance is very significant, and is a valuable part of an effective risk framework. There are a number of conditions where family history can identify increasing incidence that impact upon risks for all major classes of business, i.e. life, critical illness, private medical insurance and disability insurances. In the UK, family history is a necessary tool for underwriting some products. With regards to critical illness insurance, the use of family history is extremely important when considering specific cancers such as breast, ovary, thyroid and colon cancer, and certain neurological conditions such as multiple sclerosis. In addition, family history can also be used to identify the increased risk of coronary artery disease - when combined with other risk factors (e.g. environmental factors and behavioural), the information is highly relevant. Family history can also show the environmental and behaviour risk factors that the applicant may have been exposed to. Thus, even where there is no genetic reason for an illness, family history can demonstrate the applicant's learnt behaviours and exposure to non-genetic risks that can cause illness. What is important is that any risk factors are taken into account in a fair and proportionate manner. As stated in our previous responses, insurers only take into account relevant and necessary information when underwriting."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"The value of family history depends on the disorder. A family history of sudden death in a large number of relatives should be examined thoroughly, as it even can save lives to do so. Furthermore family history is an aggregate of both genetic and environmental influences, which may be very informative. But the use of family history in insurance practice is dependent on the particular product often restricted, specially for lower sums insured."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Family history represents clinically validated risk information which has long been used in both clinical medicine and insurance medicine and remains extremely valuable from a risk selection perspective, particularly for products such as critical illness insurance. Family history gives excellent risk information on the individual's relative risk, beyond pure genetic risk, as it includes environmental and lifestyle elements as well. Insurers steer the wording of the question on family history to only include risk relevant information, for example if asking about a family history of a particular disease, it would normally only need to be advised if the relative was affected before a particular age."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"Uncertain predictive value."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",null,null,"Impossible to answer."]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"While the family history can provide an indication of risk as compared with general population risks, it is in no way predictive. Assumptions of individual genetic status cannot be made based on family history alone, in part due to the inherent variability in disease presentation and penetrance."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",null,1,"Within the context of monogenic diseases."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",null,1,"Not necessarily. Again this is a poorly worded question. Family history may confer a strong predictive value in some single gene, highly penetrant dominantly inherited conditions - but is less likely to be conclusive in common complex polygenic conditions which arise through a combination of genetic and environmental risk factors."]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities",1,null,"The genetic component may be variable and small."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",null,1,"Family history is often more informative for estimating disease disposition than e.g. GWAS-SNP investigations or the detection of other genetic variants (like heterozygosity for the factor V Leiden mutation)."]
["Universities","Hungary","Central European University, Budapest",1,null,"It is true, especially because many of these data are not reliable, and even family members may not share it with each other."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"Family history of illness only indicates a probability of an individual's genetic make-up, and therefore has a limited predictive value. Family history can act as a guide for physicians in determining susceptibility to disease and can point a physician in a certain direction. However, in terms of being used for insurance underwriting purposes, its predictive value is limited (as there is a complex variety of factors which contribute to disease including genes, environment, lifestyle and diet)."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",null,1,"For inherited genetic disorders the predictive value may be not limited at all. "]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"Because this information is only indicative and may also involve other factors."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"Insurers should not base risk assessment on family history as it is not necessarily reliable."]

{"sheet":"Q14","index":17,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","14. Not all applicants are aware of their genuine family history (for example, in the case of adoption, assisted procreation with gametes donation or misattributed paternity). Should insurers then avoid relying on family history for underwriting decisions?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",null,1,"Responses can only be given in good faith. On the other hand, as with data from predictive genetic tests, the data should not be used on its own. "]
["Patients","Europe","Autism-Europe",1,null,"As in the case of  genetic and non-genetic  data, the predictive value  of family history in relation to the occurrence of the disease may vary."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"There is a risk that applicants who do not know their family history and hence cannot describe it to the insurers will be refused access to insurance or be charged higher premiums (because knowing nothing about their family history constitutes a risk). Such applicants would unquestionably suffer discrimination in access to insurance. Besides this, it seems to us that environmental factors have a much greater influence over the development of an illness than family history. Added to this is the fact that even people who know their family history do not necessarily know the exact cause of any illnesses (which may have been caused by external factors). Nor do families have any obligation to tell insurance applicants or insurers about their state of health. This can result in major errors of interpretation to the detriment of the applicants’ interests. Insurers should not therefore be able to base themselves on family history for any applicants."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"However, family members may not always be biologically related (e.g. unknown paternity, adoption, gamete donation in a context of an infertility treatment etc.) and this may affect the validity and usefulness of this information in trying to identify inherited risk factors (DH-BIO/INF(2012)1, page 24, para 129)."]
["Unions","Europe","Confédération Européenne des Syndicats",1]
["Insurance","Netherlands","Achmea",null,1,"The family history is not only about hereditary conditions, but also about the background and environment of the applicant in his/her “risk forming years”: his entire youth. Also, insurers never rely their decisions on the answer to only one question. The family history supplies one of many relevant medical data. The underwriting decision is taken on the overall assessment."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"The family history is not only about hereditary conditions, but also about the background and environment of the applicant in his/her “risk forming years”: his entire youth. Also, insurers never rely their decisions on the answer to only one question. The family history supplies one of many relevant medical data. The underwriting decision is taken on the overall assessment."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"For the same reason as mentioned in our response to question 13."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Insurers will use family history when it is available. Lack of family history for some applicants does not justify excluding this information for the rest."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"The important principle is equality of information between the applicant and the insurer. Where the applicant is not aware of their family history, there is no information to disclose and no anti-selective behaviour. Whilst it is true that not all applicants are aware of their family history for the reasons discussed in the Council's accompanying paper, the vast majority are aware of their family history. When examining this question, we undertook a sample assessment of the actual number of applicants who self-identify that they do not know their family history. We did this to understand whether this is an area for concern and intervention. After analysing a number of insurance applications, we found that the proportion of applicants who do not know their family history is very low - less than 1%. For the 1%, there is no information to disclose and this is understood by insurers who do not follow that line of query further. This result, coupled with the approach taken for people who do not know their family history, means that the industry considers it unnecessary to require insurers to avoid using family history for underwriting."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"We have a comprehensive approach which takes account of various factors. Family history is not the only one. Family history should only be used as extra information to be used if it has been established that the applicant has a higher risk. See the conclusions of the German \"Nationale Ethikrat\" and the guidance paper of the EU commission to the gender directive. The family history also includes environmental factors and therefore also is in part valid in case of genetically non-related family members."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Applicants can already indicate \"adopted\" or \"family history unknown\" to the question, in which case no further information is requested from the applicant. Other than this, family history is shown to be a highly accurate risk factor in both clinical medicine and insurance medicine, irrespective of misattributed paternity and other factors, as it takes account also of environment and lifestyle rather than relying purely on the genetic risk. Not all family history information is rating relevant and therefore will only be used where relevant. "]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"Family history introduces a degree of uncertainty into the process. Insurance applicants may not know about certain matters (everyone has the right not to know). Furthermore, French legislation restricts the right to trace family origins, as the right of gamete donors to remain anonymous is regarded as a leading principle. Furthermore, adopted children do not know their parents’ medical histories. Consequently family history should not be used as a criterion for access to insurance."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",null,null,"Impossible to answer."]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",null,1,"While actuarial decisions should not rely exclusively on family history information, the above scenarios are also in the minority.  Family history information is important as a component of the underwriting process, but should not be used as predictive information in the context of genetic alterations.  "]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",null,null,"Not relevant in Germany because this is not allowed in case of contract value below 300.000 EUR."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",null,null,"It may indeed be the case that applicants may not be aware of their genuine family history. But applicants may also have a poor recollection of other risk factors including past medical history or lifestyle events. As indicated in reply to question 13, family history may be highly pertinent for some conditions, and less so for others such as common complex polygenic diseases. Family history offers a proxy for exposure to a cluster of risks both genetic and environmental - and if used should be used with caution by applicants and insurers. Other factors, such as intrafamilial disclosure of risks, and subject access considerations (such as in the UK Data Protection Act section 7.4) may complicate policy in this area."]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"Family history is subjective, often information is not disclosed to relatives or misinterpreted."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,1,"In most cases, the biological family is known. The reason for NOT allowing the use of family data is not their uncertainty but their significant predictive value - and therefore potential for discrimination. As for predictive genetic tests (including non-DNA-based tests), family data should only be asked for when non-standard high-return insurances are asked for. It is important that basic insurance like health and maybe life insurance up to certain values can be obtained without family disease information."]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"Family history is merely one element of a person's medical history, and current health status. A person's own genetic make-up, diet, lifestyle and environment are all contributing factors towards a person's health and susceptibility of developing disease. Despite the inaccuracy of family history, insurers may nevertheless use this information to adversely treat individuals in the underwriting practice. Indeed, many individuals may not be aware of their family history.  The use of uncertain, inaccurate information may adversely impact upon an individual's insurance premium and/or cover. In light of the uncertain nature of family history information, and in accordance with the requirement of reliability and relevance, it is preferable that insurers avoid relying on family history in underwriting decisions."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",null,1,"The cases involving adoption, assisted procreation with gametes donation, etc. must be clearly indicated."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"Disclose such information to the applicants could be harmful for them. Moreover, when this knowledge is unexpected, it could also bring harm to him/her."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"Insurers should not rely on family history for risk assessment purposes as applicants do not always know this history."]

{"sheet":"Q15","index":18,"n_rows":38,"n_cols":7,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,6],[13,3,13,6],[31,3,31,6],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[0,6,1,6],[16,3,16,6]]}
["Activity sector","Country","Organisation","15.a  However, if family history were to be used for insurance purposes, should specific criteria be defined (e.g. reliability and relevance criteria for example, similar to those used for the evaluation of genetic risks)?",null,null,"15.b  If so, how can this be ensured?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,null,"When asked about very specific facts linked to family history, people should have the opportunity to provide additional information which they feel might contribute towards an accurate interpretation of the implications of that fact."]
["Patients","Europe","Autism-Europe",1,null,null,"Through ethical codes prohibiting the collection of information on family history which are not health conditions that run in the family and are strictly reliable, relevant and documented."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",null,null,"A purely theoretical question."]
["Consumers","France","Confédération syndicale des familles (CSF)",null,null,"As we stated previously, taking account of family history is not always appropriate and we are completely against it.","In the present state of scientific and medical knowledge, insurers should not take account of insurance applicants’ family history. Only scientists, geneticists and other similar professionals with no conflicting interests might possibly bring a shift in the consideration of family history in line with the progress of medical research."]
["Consumers","France","Union nationale des associations familiales (UNAF)",null,null,"See our answers to questions 13 and 14."]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"In the context of insurance underwriting, relevance requires that there be a clear, well-established link between the health data gathered by the insurer (whether by means of a questionnaire or a medical examination) and the risk to be covered (DH-BIO/INF(2012)1, page 22, para 113). Article 11 of the Convention on Human Rights and Biomedicine stipulates that: “Any form of discrimination against a person on grounds of his or her genetic heritage is prohibited”. The guarantee has to be given that any results will only be used if an unambiguous scientifically proven relation between data and risk is established.","There are only two major disease areas in which family history has been deemed particularly important in risk assessment by insurers: cardiovascular disease and cancer (DH-BIO/INF(2012)1, page 24, para 129)."]
["Unions","Europe","Confédération Européenne des Syndicats",null,1,"Reliability and relevance criteria are not sufficient. There also needs to be a guarantee that there will be no discrimination and that the right not to know will be respected."]
["Insurance","Netherlands","Achmea",1,null,"In insurance underwriting, the family history should only be used in step 2 (assessment of all available medical data to establish the individual risk of the applicant); but not in step 1 (questionnaire) unless high sums are insured. Its validity will depend on the disorder in question and the amount of medical data available. The less is known about the course of the disease in the applicant, the more the prognosis will depend on the course seen in his relatives.","By self-regulation."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"In insurance underwriting, the family history should only be used in step 2 (assessment of all available medical data to establish the individual risk of the applicant); but not in step 1 (questionnaire) unless high sums are insured. Its validity will depend on the disorder in question and the amount of medical data available. The less is known about the course of the disease in the applicant, the more the prognosis will depend on the course seen in his relatives.","By self-regulation."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"Don't ask too much.","In Holland already prohibited by the union of insurers (VVV)."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"An outside agency does not have the knowledge or experience to formulate such criteria equitably. Insurers are already very careful about what questions they use, and do not need further impairment of their risk assessment decisions by an outside agency."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"Where family history is used, it should be treated in the same way as any other factor in connection with the personal medical records of the applicant. This means having underwriting guidelines that are based on appropriate evidence.","In the UK this is enforced through the Equality Act 2010 (previously Disability Discrimination Act 1995) and reinforced in guidance issued by the ABI."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"Explanation: Family history should be used for \"fine tuning\" of an established risk, not as a way to discover unknown risk factors. The use also has to depend on the type of disorder and type of risk."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Insurers already only focus on specific family history risks to avoid unnecessary disclosures, and ratings are only applied where relevant or proportionate for the product being applied for. No insurer would look to rate all family history risks, as it is generally a goal to accept as many risks as possible at the standard price, often ignoring even clinically proven increased relative risk; for example the risk of having a pre-menopausal mother having breast cancer is well recognised by medical science, but our underwriting guidelines actually require two or more first degree relatives having had the disease prior to age 50 before it is rateable for life insurance.","No action necessary."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"If this approach were adopted, it would be essential to properly identify the criteria to which the use of family history would be subject. ","Firstly, through the requirement of certainty. Secondly, through the applicant’s consent to the use of particular items of data (though this does require them to “know”)."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1,null,null,"The criteria must be established by a qualified, independent body."]
["Medical professionals","Luxembourg","Collège Médical",1,null,null,"Through legislation which guarantees the right not to know or desire to know of applicants who, when informed of the purpose of the test, can agree to them and bear the risk involved in discovering family history which they might not otherwise have known about."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"Generalised empiric data regarding family history and calculated risks of disease would have to be used, with the understanding that specific, individual family history reports could be inaccurate for a variety of reasons (such as non-paternity, adoption, assisted reproductive technologies, etc.).","Clear oversight is required, with periodic reviews of the parts on family history of the applicant's questionnaire."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,"See our response to question 14; in case of contract value more than/equal to 300.000 EUR: yes.","Exact/appropriate family history and risk assessment."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",null,1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,null,"It is difficult to see how this could be enforced in practice. A voluntary agreement between stakeholders might be the most feasible approach."]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,"Under the legislation in force, taking account of family history may violate the principle of individual insurance.","Through a family survey by a clinical geneticist. "]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"The same factors relating to variability must be addressed. Many individuals in this situation will be at no increased risk.","This can only be evaluated on an individual disease basis, which may be too complex to incorporate."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"Only first degree relatives should be asked for (i.e. unexpected death of sibling or parent, age of parental death, causes of death, well-known inherited conditions among first degree relatives) - and as mentioned only in cases of non-standard high return insurances."]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"Certain diseases have a strong genetic link, for example, Huntington's disease, cystic fibrosis and Parkinson's disease. Other genetic disease are complex multifactorial conditions, and the reliability and relevance of this information is uncertain and in conflict with principles of reliability and relevance - therefore data of family history of these conditions is uncertain. If family history were to be used for insurance purposes, criteria such as certainty and reliability are required.","It would be necessary to have regard to the type of risk involved and the type of condition in question. As noted in previous comments, certain diseases have a stronger genetic link than others. A medical report may be able to verify the reliability of the genetic link in terms of use of family history."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,null,"By using only criteria that meet established scientific and clinical data. "]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,null,"In any case, they must ensure the absolute reliability of the data."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,null,"Any questions put should meet the qualitative criteria outlined above (see our response to questions 14 and 15)."]

{"sheet":"Q16","index":19,"n_rows":40,"n_cols":15,"rows_kept":40,"cut":false,"hidden":false,"merged":[[7,14,8,14],[7,9,8,9],[7,10,8,10],[7,11,8,11],[7,12,8,12],[7,13,8,13],[7,3,8,3],[7,4,8,4],[7,6,8,6],[7,7,8,7],[7,8,8,8],[1,12,1,14],[15,3,15,14],[36,3,36,14],[0,0,2,0],[0,1,2,1],[0,2,2,2],[18,3,18,14],[33,3,33,14],[0,3,0,14],[1,3,1,5],[1,6,1,8],[1,9,1,11],[7,5,8,5],[7,0,8,0],[7,1,8,1],[7,2,8,2]]}
["Activity sector","Country","Organisation","16. Should insurers\n"]
[null,null,null,"a. establish rules (e.g. privacy codes, good practices, codes of conduct) which protect the security and confidentiality of data (in accordance with domestic law)?",null,null,"b. make them available to the public?",null,null,"c. ensure that these rules are enforced. Failure to adhere to the rules should lead to appropriate action, including disciplinary measures and, if necessary, legal consequences?",null,null,"d. only provide access to members of their staff who need to use them in order to underwrite an insurance application or assess a claim?"]
[null,null,null,"YES","NO","Comments (if any)","YES","NO","Comments (if any)","YES","NO","Comments (if any)","YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,null,1,null,null,1,null,null,1]
["Patients","Europe","Autism-Europe",1,null,"The rights of the individual to privacy should be protected.",null,1,"Protection of personal data should be strictly ensured.",1,null,null,1,null,"Access to health data should be strictly permitted only to health professionals or persons subject to equivalent confidentiality requirements."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",null,null,"Experiments with self-regulation in Belgium do not give us any reason to be enthusiastic about such an approach. If this approach is adopted nonetheless, it should not be implemented unless there is an open and frank consultation with all those concerned on the subject of the rules to be applied.",null,null,"This is a minimum requirement and should be accompanied by an explanation of each rule.",1,null,null,null,1]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,null,1,null,null,1,null,null,1,null,"Insurance company doctors only."]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"In the EU, binding legal rules already exist. Codes of good conduct would not therefore be relevant. For insurers in states outside the EU, however, this seems an interesting path to explore. As a consumer association, our first wish would be for the rules on personal data protection, particularly those relating to sensitive data, to be respected at last. We call on states to offer the legal and financial means to act efficiently to supervisory bodies that are truly independent from all political and financial influence. We also expect professionals to comply with these standards and to be prosecuted and/or punished if they break the rules. We would also ask for the entire staff of insurance companies to be made to understand the importance of data protection so that they will contribute to it (through awareness-raising activities and training). Lastly, we hope that the Council of Europe will provide assistance, particularly to the EU, to work in this direction and foster compliance with these standards, which are so crucial for the preservation of fundamental freedoms.",null,null,"In view of the danger that such files represent for the protection of fundamental freedoms, we are not in favour of self-imposed rules and declarations of good intentions. What we want is the enactment, application and enforcement of binding rules in this sphere.",1,null,"How can a rule be observed if sufficiently potent control mechanisms and penalties are not introduced? This means of course that we believe that infringements should attract administrative and judicial penalties.",1,null,"More specifically, not all members of staff should have access to these files as this would pose too great a threat to the protection of personal data. Only those staff working directly on the calculation of risks should have access to such data, together with the people responsible for supervising contracts and the accuracy of questionnaires. Commercial staff and agencies should not have direct access, however, but have to submit requests to company headquarters. They should have no more rights than persons not working directly on the matter (such as marketing and secretarial staff). Insurers should ensure that as few people as possible have access to such data. Insurance companies should be covered by a binding instrument guaranteeing the most restricted access possible, confined to a select group of people."]
[]
["Consumers","France","Union nationale des associations familiales (UNAF)",1,null,null,1,null,null,1,null,null,1,null,"Allow access to insurance company doctors only."]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"In the first place, sensitive data can only be collected and processed with the free and informed consent of the data subject. Moreover, on a purely individual stand, considering the possible negative outcomes of underwriting and given the limited room for manoeuvre for the insurance applicant, it would be important to ensure the transparency and the clarity of this pre-contractual phase as well as the fairness of the process, re-establishing henceforth a certain balance between the insurer and the insured (DH-BIO/INF(2012)1, page 13, para 59). ",null,1,"Article 8§1 of the European Convention on Human Rights (ECHR) stipulates that “Everyone has the right to respect for his private and family life, his home and his correspondence”. According to the case-law of the European Court of Human Rights, health-related information touches upon the very core of the right to private life and the processing of such data falls within the realm of Article 8 of the ECHR. Likewise, respecting the confidentiality of such data is, according to the Court, “a vital principle in the legal systems of all the Contracting Parties to the Convention.\" (DH-BIO/INF(2012)1, page 14, para 65).",1,null,"The BdV advocates that any kind of failure to adhere to the rules should lead to a civil fine of at least 300.000 Euro each.",1,null,"Moreover, once obtained, the relevant health-related data collected from an insurance applicant can theoretically be stored longer than necessary (to the realisation and execution of the contract) and used for example, in combination with health data found in other applications made by this person or his relatives or, information obtained from other sources (and communicated for other purposes), without the knowledge and consent of the applicant. Such potential abusive conducts would also raise issues with regard to the right to respect for private life (DH-BIO/INF(2012)1, page 13, para 64)."]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,"This does not go far enough. Such rules should be laid down by the authorities.",1,null,null,1,null,null,1]
["Insurance","Netherlands","Achmea",1,null,"In most countries, clinicians are allowed to exchange data about their common patient without his/her consent. For insurance doctors, the regulations are wisely much stricter. So the rules referred to above already exist for insurance doctors. All countries should have strict regulations, applied to all doctors, whatever their position.",1,null,"Rights and obligations should be known to the applicants and thus to the public.",1,null,null,1,null,"Again: All countries should have strict regulations, applied to all doctors, whatever their position (clinicians, insurance, GP). Only assistants to the doctor should have access under strict conditions."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"In most countries, clinicians are allowed to exchange data about their common patient without his/her consent. For insurance doctors, the regulations are wisely much stricter. So the rules referred to above already exist for insurance doctors. All countries should have strict regulations, applied to all doctors, whatever their position.",1,null,"Rights and obligations should be known to the applicants and thus to the public.",1,null,null,1,null,"Again: All countries should have strict regulations, applied to all doctors, whatever their position (clinicians, insurance, GP). Only assistants to the doctor should have access under strict conditions. Exception: insurers must be granted permission to use anonymized data for medical statistical analysis, to enable them to fulfil their obligations to render actuarial prove for their underwriting policy. See also our answer to question 19. "]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,null,1,null,"Only as anonymous data used in scientific research.",1,null,"Otherwise the government will do that.",null,1,"Anonymized data may be used for scientific purposes by third party."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",1,null,"This is already being done in practice.",1,null,"This is already being done in practice.",1,null,"This is already being done in practice.",null,1,"There are other business reasons why insurance staff need access to applicant data. Outside agencies should not interfere with the normal operations of a commercial business."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"These rules already exist in law and are reinforced through industry guidance. New rules do not need to be developed.",null,null,"National legislation in the UK, such as the Data Protection Act, is available to the public. This is the responsibility of the Government/Parliament.",null,null,"Where the rules are set out in national legislation, the legislation will (usually) set out the consequences of non-compliance.",null,null,"Insurers have processes in place to ensure that access to data is limited to appropriate people. There are special requirements in the case of medical data, and genetic test results. Overall comment for this question: This is all about data protection legislation, which insurers must abide by. In addition in the UK we have an industry confidentiality code which expands on this."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"Because these already exist - e.g. Bundesdatenschutzgesetz (Federal data protection law) and Germany § 203 I nr. 1 StGB Arztgeheimnis and Versicherungsgeheimnis (secrecy to be safeguarded by law) and § 213 Versicherungsvertragsgesetz (Insurance contract law). Code of conduct concerning data security in Germany in collaboration with data security authorities and consumer groups. These rules are even more strict than for clinical doctors, who are free to exchange medical information without explicit consent of patients.",null,null,"Laws are always public and furthermore we inform every applicant about their rights and obligations (German perspective).",null,null,"Already settled in the above mentioned laws and the Code of conduct and ensured by the particular compliance officers of the insurance companies, surveyed by German data protection authorities (German perspective).",null,null,"The staff should be restricted to assistants of the medical doctor. We already have a code to regulate this e.g. restricted access to sensible data files."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"Insurers fully recognise the sensitivity of the data they need to handle and comply fully with the extensive national and European laws in this respect.",null,1,"The laws are already available to the public, how each company ensures that they comply with those laws is proprietary and publishing these details risks weakening those same security standards.",1,null,"Insurers are already required to comply with the laws on data security with financial, reputational and criminal consequences for failure to do so. Each insurer and reinsurer also uses internal and external auditors to ensure compliance, and spends a lot of money on ensuring their systems are compliant; this is a key issue for the industry as we need to deal with sensitive information all the time, and do not want to risk losing this access due to a loss of data incident.",1,null,"Access should indeed by limited to only those staff who require access as it is required by EU and national laws on data protection; essentially only those with a genuine business need should have access to such sensitive data."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"This is essential. Firstly, there is the issue of the use of computer files to be resolved. Secondly, there is the matter of access to data (to whom, how, etc.?) and length of storage to be clarified and restricted.",1,null,"Transparency about the rules that apply to the storage of data by insurers is essential. The rules must be displayed publicly and brought to the attention of insurance applicants.",1,null,"Disciplinary, civil or criminal penalties must be applied to those who break these rules.",1,null,"Staff must be bound by the strictest secrecy and access to this type of data must be restricted. For instance, only doctors carrying out tasks for insurers should be given access to medical data on insurance applicants. They will then give their opinion to the insurer but their opinion will relate only to the applicant's insurability, not to his or her state of health."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",null,1,"It is not for insurance companies to lay down these rules. They must comply with the rules laid down by national and European law. Insurance companies should, moreover, make these national and European regulations available to insurance applicants.",null,null,"Not applicable.",null,null,"Not applicable.",null,null,"Not applicable."]
["Medical professionals","Luxembourg","Collège Médical",1,null,null,1,null,"The advantage of this is that applicants are fully aware of the rules.",1,null,null,1,null,"Time limits on data storage."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"All of the below questions pertain to privacy laws that are currently in place in many jurisdictions.  Organizations holding any form of health data should have clear privacy policies, with defined required actions in the event of any privacy or security breach.",1,null,null,1,null,null,1,null,"Clear audit and review protocols must be in place to ensure appropriate access by staff and other agents of the organization."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,null,1,null,null,1,null,null,1,null,"But only for specific reasons of the applicant concerned (no disclosure for family member contracts)."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1,null,null,null,1,null,1,null,null,1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"Where domestic law applies, they will be obliged to do so in any event.",1,null,"Transparency is an important consideration here - and minimises the potential for applicants to be misled about how their data will be used.",1,null,"Employees of insurance companies should have contractual obligations to keep applicant information confidential and these should be enforced.",1,null,"In the UK, this requirement is consistent with the obligations in the UK Data Protection Act 1998 that data processors only have access to data that is necessary for the purpose for which the data was collected."]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,null,1,null,null,1,null,null,1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"This is absolutely paramount. No medical practitioner should be asked to release medical information if this was not absolutely guaranteed.",1,null,"Transparency is imperative for trust.",1,null,"Without exception. To contemplate otherwise would have disastrous consequences.",1,null,"Similar to medical files, only those who need information should have access. Even stricter confidentiality codes are required for non-medical personnel having access to such information."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,null,1,null,"The handling of data must be transparent and accessible for external audit.",1,null,"This requires international regulations.",1]
["Universities","Hungary","Central European University, Budapest",1,null,null,1,null,"Rules should be public (e.g. website of the insurance company). Not everyone is interested in all technical aspects, however, in case of controversy, it is very useful both for the insurance company, as well as for the client that these rules are easily accessible.",1,null,"I think here sanctions similar to the violation of the data protection norms should be applicable.",1,null,"See our response to question 16.b."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"In accordance with data protection legislation and in accordance with the duty of medical confidentiality, it is important that insurers abide by their obligations when collecting and using sensitive health data.  Therefore, it is good practice to establish clear guidelines (for example, indicating the necessity of obtaining consent from the insurance applicant).  It is important, when dealing with health data (sensitive personal data), to obtain the applicant's express consent. It is also important to establish clear guidelines in relation to maintaining the security of data and ensuring data is only processed for a specific purpose and retained for the requisite period.",1,null,"For transparency purposes, it is desirable that these rules are made available to the public.  This may instil confidence in insurance applicants and the public, and offer assurance that privacy and confidentiality will be upheld. ",1,null,"In order to ensure that data protection laws are upheld and privacy is respected, it is necessary to have strong enforcement mechanisms, and provision for disciplinary measures. In the absence of strong enforcement and disciplinary measures, the effectiveness of the data protection laws may be diluted, leading to the violation of fundamental human rights.",1,null,"To maintain the confidentiality and security of data, any person acting under the authority of the data processor, must not process, except under the instructions of the processor. In addition, to uphold data protection laws, and maintain privacy of personal health data, such data should only be used for specific purpose. In the event that information needs to be disclosed to members of staff, it is necessary to keep the insurance applicant fully informed of any further use of the data and the required consent obtained, if necessary."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1,null,null,1,null,null,1,null,null,null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1,null,null,null,null,null,1,null,null,1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"In any case a relevant license and permanent control from the national Data Protection Authority is necessary. Insurers will facilitate these procedures by adopting codes of conduct for preserving confidential storage and processing of data ",1,null,"The public must be informed of any rules and codes applied.",1,null,"This is the only way to ensure that these rules are followed. The national DPA has also the competence to monitor and ensure enforcement of such rules.",1,null,"This will limit misuse of the information."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,null,1,null,null,1,null,null,1]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"Data consultation arrangements should guarantee respect for confidentiality, particularly through procedures to control access.",1,null,"Any such rules and security rules should be accessible to the public.",1,null,"In France, for example, Articles 225-1 to 225-3 of the Criminal Code expressly prohibit discrimination in access to goods and services on the grounds of a person’s state of health or genetic characteristics. Article 226-25 of the Criminal Code provides for penalties where genetic examinations are carried out for purposes other than medical ones without obtaining prior consent from the person concerned. Provision  should also be made for disciplinary measures.",1]

{"sheet":"Q17","index":20,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[13,3,13,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5]]}
["Activity sector","Country","Organisation","17. The insurer should inform the applicant/insured person of any data concerning him/her obtained from a third source. Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,"Even if the third source was one which was totally open to the public, could be consulted by anyone without restriction and the applicant was fully aware of the existence of such publicly available data, it could be that such information was incorrect or misleading and that s/he had no possibility to amend or erase it."]
["Patients","Europe","Autism-Europe",1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"If the information was obtained legally."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"We must assume at the outset that in principle insured persons themselves should be the only people entitled to inform anyone of their medical situation. However, if third parties are authorised by law to do so, then insured persons should automatically be informed because their consent has to be required before data is “transferred”. If they are not informed, the penalty should be that this risk cannot be taken into account (as the means of obtaining the information was illegal, it may not be used). It is also essential for insured persons to be aware of such information, so that, if necessary, they can dispute its accuracy."]
["Consumers","France","Union nationale des associations familiales (UNAF)",null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"In the insurance context, this means providing the insurance applicant with appropriate information on the possible consequences of such collection/processing on his/her insurability (including the modalities and purposes of the collection/processing which may involve the international transfer of the data for reinsurance purposes)."]
["Unions","Europe","Confédération Européenne des Syndicats",1]
["Insurance","Netherlands","Achmea",1,null,"Medical data should only be collected with informed consent."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"Medical data should only be collected if it is relevant, and only with informed consent of the patient/applicant."]
["Insurance","Netherlands","Nationale Nederlanden/ING",null,1,"Too much bureaucracy; prior information to consent is much better."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"This is too broad and burdensome a requirement.  Insurers already inform applicants of findings that are of concern to the applicant, such as lab test results. It makes no sense to forward to an applicant medical records or financial records to which the applicant already has access."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"We support the general principle that the applicant/insured person should be able to access information held by the insurer. We believe that the starting point should be the request and informed consent of the applicant/insured person. This approach is consistent with the Access to Medical Records Act, which provides the applicant with the statutory right to review data before or after it is provided to the insurer. It is also consistent with the Data Protection Act, where the applicant/insured person has a right to full disclosure of data held by the insurer about them. The applicant or insured can exercise this right of access to information at any given point."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"In Germany these data can only be transferred to the insurer with  informed consent. "]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"The applicant should be informed that information is being requested, but the insurer should not be required to inform the person of the nature of the data when received, as what is told to the patient is the responsibility of the doctor they consulted."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"This is essential. It has been said that insurers should not receive data from third parties. If this happens, the person concerned should be informed."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"If medical data is disclosed to insurers, this is outside the purpose for which it was collected and consent should be obtained from the applicant/insured person."]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"It would be unethical not to."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"In accordance with data protection legislation, the data controller must provide the insurance applicant with information such as the identity of the controller, the purpose of processing and the recipients of the data. If the applicant can be identified by the data in question, then it is necessary to inform the applicant about this data, in accordance with the right to privacy. Further, it is necessary to obtain the applicant's consent if this information is being processed and used for underwriting purposes."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"As in the case when a family doctor discloses information to the insurer, the applicant must be informed."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"Transparency between the insurer and the insured person should be guaranteed. If the insured was not informed about of data obtained by third source, it may create helplessness."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"Only data corresponding to the insurer’s request and of relevance to the underwriting process may be communicated. The data may only be passed on with the consent of the person concerned and this implies that they will have been informed beforehand."]

{"sheet":"Q18","index":21,"n_rows":38,"n_cols":4,"rows_kept":38,"cut":false,"hidden":false,"merged":[[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,1,3]]}
["Activity sector","Country","Organisation","18. What are the arrangements to be made by insurers to make available to the applicant any processed data concerning him or her?"]
[]
["Patients","Europe","Alzheimer Europe ","The applicant/insured person should be informed by normal mail and, in addition, by any other means of communication previously agreed between the applicant and the insurer (e.g. email, phone, etc.). As part of this communication, the applicant should be informed of his/her right to check the data which the insurer has obtained and if incorrect to have it corrected or deleted. "]
["Patients","Europe","Autism-Europe","A transparency clause should be included in any insurance application explaining how the underwriter can have access to all the processed data. "]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS","There is a need for complete openness and transparency towards insurance applicants. The rule might be that all data to which insured applicants have not had access may not be applied to therm. "]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé","Should be communicated at the insurance applicant's request."]
["Consumers","France","Confédération syndicale des familles (CSF)","It would be relatively easy to make an arrangement for insurers to provide all the information they have on applicants in a durable form that would be signed by applicants. It may not be realistic to provide that all personal data held by insurers and third parties should be presented to the applicant. A file of this type would pose far too high a threat for the protection of personal data and hence of fundamental freedoms. However, all information held by insurers with whom insurance applicants are negotiating a contract should be passed on to applicants (among other things so that they can dispute the accuracy thereof if there has been an error). In addition, an arrangement of this sort would not be particularly costly."]
["Consumers","France","Union nationale des associations familiales (UNAF)","They should be added to the person's personal medical file."]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]","Furthermore, in cases where the data is collected using a medical examination, the insurance applicant must be informed in advance of possible additional information about his/her health that might result from such an examination. If the information is collected from third parties, the data subject must be informed of such collection and of the content of the information collected (access by individuals to information concerning them) (DH-BIO/INF (2012)1, page 17, para 80)."]
["Unions","Europe","Confédération Européenne des Syndicats","All data collected from third parties must be brought to the attention of insurance applicants. The content of such information must be revealed to applicants save in cases where they have specifically requested to remain ignorant about it. "]
["Insurance","Netherlands","Achmea","All doctors (clinicians, insurance, GP) should be obliged to give full access to the stored medical data within e.g. 2 weeks, without charging a fee (unless retrieval is very costly)."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)","All doctors (clinicians, insurance, GP) should be obliged to give full access to the stored medical data within e.g. 2 weeks after receiving the request from the patient, without charging a fee (unless retrieval is very costly)."]
["Insurance","Netherlands","Nationale Nederlanden/ING","Storage for a short while, (see question 19) and give the data to the applicant when he/she asks for it. "]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.","Insurers already have agreements with applicants about what information may be shared. Some processed data may involve confidential and proprietary information about the insurer that is not appropriate for sharing with the applicant."]
["Insurance","United Kingdom","Association of British Insurers - ABI","Under the Data Protection Act, the applicant has the right to request the information from the insurer, through Subject Access Requests. In addition, at the time insurers obtain a report from their doctor, consumers can request to see the data before or after it is sent to the insurer. "]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re","Data concerning underwriting can be made available on request of the applicant."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited","Insurers are required to comply with national laws on allowing access to processed data concerning them, for example the Access to Medical Reports Act in the UK."]
["Medical professionals","France","Académie nationale de médecine (France)","Clear and detailed information should be given to insurance applicants about their right of access to data concerning them. This should relate to the extent and means of access and the identity of the data controller whom they can contact (the same principles can be applied here as in the sphere of information technology and freedoms)."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)","Insurers should allow free access to the files concerning insurance applicants or insured persons at their request."]
["Medical professionals","Luxembourg","Collège Médical","Applicants should be given a secure, confidential and restricted right of access, meaning that they bear full responsibility for any disclosure."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors","Written notification from the insurer to the applicant, outlining the information obtained from a third party."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]","Active, just in time, written forms."]
["Geneticists","Latvia","Latvian Society of Medical Genetics","Sending an official letter to applicant asking for permission."]
["Geneticists","United Kingdom","PHG Foundation ","Applicants should be told how they can access this processed data. Fees for accessing such data should be reasonable (akin to subject access orders in the UK Data Protection Act for example)."]
["Geneticists","France","Fédération Française de Génétique Humaine","Insurers should take a transparent approach and transmit any data concerning them to insured people."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n","All information gathered should be accessible for the applicant upon request. This could be via an internet interface allowing the patient to look into personal files, or by telephone contact."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)","Written information in the form of a letter to the applicant."]
["Universities","Hungary","Central European University, Budapest","It should be based on agreement how to communicate this data to the applicant. (A special code might be provided so that the applicant can consult all his/her processed health care data.)"]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland","There should be a system of transparency whereby the insurance applicant is kept fully informed as to data concerning them, and provision made for the applicant to access such data and to correct the data, if necessary. The insurance applicant should also have the opportunity to object to the processing of the data, if desired."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]","Applicant shall be informed by insurers if he/she wishes to have the information."]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health","The applicant should have access to all information concerning her/him and be informed about the use and storage of the data. "]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission","Applicants should always control the data collection by providing their informed consent. Therefore, all the information is already available to them. In principle incidental findings occurred by further processing need to be disclosed to the applicant's personal/family doctor."]
["Consultative bodies","Spain","Spanish Bioethics Committee","Allow the access to your health information as recognized by Data Protection Spanish Law."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL","Under Article 39 of the act mentioned in our reply to question 1, insurance companies are required to meet applicant's requests for access. "]

{"sheet":"Q19","index":22,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[13,3,13,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5]]}
["Activity sector","Country","Organisation","19. In accordance with general data protection principles, where the application for insurance coverage is rejected, the data collected for insurance purposes shall only be stored for use in the context of a dispute concerning the said rejection, and only for the period of time required to settle the dispute. Are there reasons justifying any possible longer storage of the data?"]
[null,null,null,"YES","NO"]
["Patients","Europe","Alzheimer Europe ",1,null,"Longer storage of the data should be possible if, for example, the applicant went to a lot of expense or trouble to provide the information and would personally prefer the insurance company to keep it for possible future applications subject to a few conditions: 1. that the applicant can decide at a future date whether the information can be used; 2. that the information is still of interest to the insurer at a future date, and 3. that the insurer is willing to store such data (which might not be the case if the applicant has no other insurance policies with the company). "]
["Patients","Europe","Autism-Europe",null,1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",null,null,"The greatest possible caution is required with regard both to the principle of storage and the length of storage."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",null,1,"The danger is that files are set up. The data in these must be destroyed either after the application has been rejected or once the contract has expired."]
["Consumers","France","Confédération syndicale des familles (CSF)",null,1,"All other reasons would be in breach of current regulations. Keeping data where there is a dispute over the rejection of an application is already an exception to the rule that no files should be stored. Consequently, to allow other reasons is tantamount to giving professionals the chance to keep files which may be useful to them for other purposes (sale or transfer to other insurers or professionals, keeping information on individuals applying again for a contract for several years after the rejection of their application, etc.). In view of the frequent lack of respect for the regulations on personal data protection, there should be no further exceptions."]
["Consumers","France","Union nationale des associations familiales (UNAF)",null,1,"Care should be taken when setting up files."]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"The data may be conserved for purposes of scientific research or statistics, or other purposes provided for by law, they should be conserved separately and be accessible only for these purposes subject to appropriate safeguards (DH-BIO/INF(2012))1, page 16, para 76). In addition the data should be made anonymous."]
["Unions","Europe","Confédération Européenne des Syndicats",null,1]
["Insurance","Netherlands","Achmea",1,null,"1. Insurers are obliged to provide actuarial proof, which can only be established through statistical studies. One can only study the accuracy of the decision to refuse the applicant, if the applicants in question remain part of the statistical study group. If not, insurers cannot fulfil their legal obligations. \n2. Many applicants return after some time, when their medical condition has improved. They expect the insurer to have kept the medical record, so they do not have to go through the ordeal of disclosing everything again. Although the arguments for destroying the medical records are sound and valid, those arguments against destroying them are too. Insurers should only be obliged to destroy the records if the applicants ask for this (which also means that insurers should be obliged to inform the applicants of their rights)."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"1. Insurers are obliged to provide actuarial evidence, which can only be established through statistical studies. One can only study the accuracy of the decision to refuse the applicant if the applicants remain part of the statistical study group. If not, insurers cannot fulfil their legal obligations. See also the answer to question 16.d,\n2. Many applicants return after some time, when their medical condition has improved. They expect the insurer to have kept the medical record, so they do not have to go through the ordeal of disclosing everything again. Although the arguments for destroying the medical records are sound and valid, those arguments against destroying them are too. Insurers should only be obliged to destroy the records if the applicants ask for this (which also means that insurers should be obliged to inform the applicants of their rights). \n"]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"Possible wrong-mentioning of the applicant (not telling the truth); only applicable for the health questionnaire (signed document) and summaries used for the risk estimation.  "]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",1,null,"Insurers often need to analyse the differences between the risks that are accepted and those which are rejected/declined.  An enforced lack of this statistical data interferes with the ability of the insurer to better understand its experience and share the benefits of this experience in better future products and services."]
["Insurance","United Kingdom","Association of British Insurers - ABI",1,null,"While we agree with the principle that information should be kept for the period that it is justified, we can see reasons apart from disputes that may require the insurer to continue to store the data. Being able to access, process and store personal data is central to insurers’ ability to provide consumers with appropriate products at fair prices. Inability to use data effectively would almost certainly result in consumer detriment in the form of higher prices and/or under-insurance.\nOther reasons why insurers may store data for longer include:\n- financial services providers are required in the UK to retain data to demonstrate regulatory and legal compliance. As a minimum, such data must be kept for six years;\n- underwriting information can be kept to maintain a record of the applicant's provision of information to a insurer. In the case of future applications, the client could claim that they had already disclosed the information (despite it being in an application that had been rejected)."]
["Insurance/\n£","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",1,null,"Yes, storage of data is necessary for the period in which a dispute can arise. If a dispute does not arise shortly after the application and its rejection, the insurer must be able to justify his rejection later."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"Data analysis to ensure long term accuracy of underwriting decisions requires that at least summary information be retained. The requirement for insurers to avoid unnecessary testing, or re-testing in this case, would also mean that insurers need to know what was seen by them in the past (applicants frequently come back to the same company despite a previous rejection), as having to go through a whole medical testing process twice causes unnecessary discomfort and inconvenience to the customer."]
["Medical professionals","France","Académie nationale de médecine (France)",null,1,"There should be a time limit on storage. There is no reason to keep data beyond the time required to settle any dispute."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",null,1]
["Medical professionals","Luxembourg","Collège Médical",null,1,"Data are kept for as long as the contract lasts except where a decision not to provide coverage results in the termination of the contract."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",null,1,"Once the dispute has been settled, the information should be destroyed, with notice to the applicant."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",null,1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",null,1]
["Geneticists","United Kingdom","PHG Foundation ",null,1,"The UK Data Protection Act provides that data should only be retained by the data processor for as long as necessary. In the case of a potential insurer who has rejected an application, the only grounds for keeping data for longer than the time required to settle the dispute might be to identify an applicant as vexatious, or perhaps for quality assurance or internal audit purposes. In both cases, personal identifiers could be removed from the data so that it was de-identified. "]
["Geneticists","France","Fédération Française de Génétique Humaine",null,1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",null,1,"There is no need for a third party to have access to these data when an agreement of an insurance is not in place."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",null,1,"If the applicant has deliberately cheated the insurance company and on purpose given false information or made false claims, this could have long-term consequences - but this does not mean that medical data need to be long-term stored."]
["Universities","Hungary","Central European University, Budapest",1,1,"My answer follows from the general data protection norms.  "]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",null,1,"Data protection legislation provides that personal data should only be  retained for a certain limited period and for no longer than is necessary. There are no reasons justifying any further storage of data.  It is also necessary for the insurance applicant to be informed as to the purpose of processing.  In the event that an insurance company is reconsidering a claim, then it may be justifiable to retain data for a longer period (however, in these circumstances, it is important that an individual's consent is obtained, and he/she is kept fully informed of the reasons for retaining the data). "]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",null,1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",null,1,"Since the collected data served their purpose, i.e. the application process for insurance coverage, the data need not be stored for any longer. "]
["Consultative bodies","Spain","Spanish Bioethics Committee",null,1,"When the application for insurance coverage is rejected and the dispute is resolved, the data should be destroyed."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",null,1,"Under Article 6 of the law referred to in our reply to question 1, data collected in the context of an insurance application which was rejected may only be kept for the time during which the applicant may appeal against the decision.  The period for which data are kept if the contract is signed must not exceed the length of the contract plus the statutory limitation period."]

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["Activity sector","Country","Organisation","20. With a view to improving the transparency and fairness of the underwriting process insurance companies should provide, where appropriate on request, the specific reasons for any higher than standard premium, rejection of an application or exclusion. This would give the applicant, where relevant, the opportunity to challenge the decision of the insurance company, thus contributing to the fairness of the process. Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1]
["Patients","Europe","Autism-Europe",1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"However, in such cases insurance companies must not just give general explanations but give specific reasons for their decision in the case in question. This information must enable applicants to contest the decision, both vis-à-vis the company and in dealings with the higher authorities in the habit of dealing with such matters such as equal opportunities offices or insurance ombudspersons."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"We naturally agree with this idea. As a consumer rights association, it is our aim to establish transparency and accountability as principles in all sectors of activity. As insurance is a delicate field, we are particularly in favour of insurers explaining any change in their offer of an insurance contract. It must be made clear to applicants why the insurers have rejected their application or are charging a higher premium and they should be able to dispute the information they are given. "]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"Moreover, on a purely individual stand, considering the possible negative outcomes of underwriting and given the limited room for manoeuvre for the insurance applicant, it would be important to ensure the transparency and the clarity of this pre-contractual phase as well as the fairness of the process, re-establishing henceforth a certain balance between the insurer and the insured (DH-BIO/INF(2012)1, page 13, page 59)."]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,"This is an important but limited requirement. It is regrettable that at no point does the questionnaire address the links between the underwriting process and the fact that some forms of insurance are connected with employment contracts. This applies in particular to sickness and invalidity insurance, life insurance, supplementary insurance related to retirement and, in some countries, insurance covering occupational hazards. Any variation in the premiums asked for or the cover provided or, especially, any decision to reject an application means that employers will have access to information relating directly or indirectly to their employees’ state of health. This issue should have been raised in this questionnaire."]
["Insurance","Netherlands","Achmea",1,null,"All doctors (clinicians, insurance, GP) should be obliged to explain any action, any enquiry, any treatment, any unwelcome consequences, any adverse decision."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"All doctors (clinicians, insurance, GP) should be obliged to explain any action, any enquiry, any treatment, any unwelcome consequences, any adverse decision."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",1,null,"This is already being done.  There is a limit to how specific an insurer can get, so an insurer must be able to communicate its decision to the extent that it is justified, without interference by an outside agency."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"At a general level, insurers will provide information on request to an applicant where special terms are applied or the application is rejected. This is considered to be part of the regulatory framework. The ABI and the British Medical Association have issued guidance which states that insurers should provide written reasons for any higher than standard premium, rejection or exclusion. Further, they should not ask applicants' doctors to explain their actuarial and underwriting decisions.\nIn terms of genetic test results, the Concordat and Moratorium in the UK sets out an applicant's right to ask an insurer to provide information on whether, and if so, how, a predictive test result has contributed to an underwriting decision."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null," For insurances, applicants should be able to receive on request an explanation of a higher than standard premium. This is mostly reality, but depends on the particular insurance company - to fix this as a general rule may be difficult, since lengthy discussion on  large scale would hamper the economic and efficient workflows in the company. "]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"Insurers already provide this on request as a better understood rating is more likely to be accepted by the customer. It must remain on request, however, as most substandard decisions are already well understood by the customer as are usually linked to conditions disclosed by themselves. "]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"A requirement to give reasons enables insurance applicants to understand why they cannot be insured or why they are being charged more. As  a result they can discuss the matter with the insurers in full knowledge of the facts. They can also turn to another insurer, knowing that the answer may be different but also why their application may be rejected."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"Both parties should have access to the same information. This is needed if a dispute on the conditions is anticipated and a part of the transparency principle. "]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"In the event that an insurance company unfairly discriminated against an individual (either by refusing insurance coverage or by charging a higher than standard premium), the individual would have an opportunity to challenge such a decision.  In accordance with the social purpose of insurance, there should not be any unduly prohibitive obstacles to accessing insurance and health care."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"Yes, and this must be also included in the codes of practices and conduct. "]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"These measures could be considered fair to both parties."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"At least where this is an automated process, insurance companies must comply with paragraph I, 5° of Article 39, which provides that the controller must pass on information making it possible to understand the logic involved in an automated process where a decision has been taken on this basis. Therefore where the premium has been increased or the application has been rejected, insurers are required to pass  this information to applicants."]

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["Activity sector","Country","Organisation","21. Should underwriting practices be monitored with a view to ensuring adherence to fundamental principles?\n",null,null,"If so, by what type of monitoring mechanism:"]
[null,null,null,null,null,null,"a. by a mediating body?",null,null,"b. by a body coming under the insurance company?",null,null,"c. other?"]
[null,null,null,"YES","NO","Comments (if any)","YES","NO","Comments (if any)","YES","NO","Comments (if any)","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,null,null,1,null,null,1,"There would be a conflict of interests, a risk of lack of objectivity and a risk of bias.","By an independent body with the necessary power to investigate and take appropriate action."]
["Patients","Europe","Autism-Europe",1,null,null,1,null,null,null,1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",null,null,"It is essential for actuarial practices and rules to be subject not only to the legal rules relating specifically to insurance but also to broader rules relating to patients' rights and to any law governing fundamental rights (DH-BIO/INF(2012)1, section 3 \"Legal principles\". ",1,null,"Provided that this body works in open and frank cooperation with others, particularly with consumers and patients. ",null,null,"See reply to question 16.a."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,null,1,null,null,null,1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"Actuarial practices are a key to all these questions so it is vital to supervise them. If an application is rejected or an applicant’s undeclared state of health is invoked,  the decision is always based on actuarial calculations and the need to preserve the balance of the insurance fund. How then can we assess whether the reasons given are legitimate without checking the calculations?",null,1,"A mediation system is not enough to resolve such issues. Mediation must always be a remedy which the parties should accept in principle but whose findings are not binding. In view of the importance of this question, this should not be the system that is proposed.",null,1,"How could a body set up by an insurance company have the necessary independence to follow up and monitor compliance with fundamental principles by the same company?","A committee should be appointed that is independent from governments and above all from insurance companies and would have the power to investigate actuarial practices and order professionals to bring their practices into line with the relevant standards (based in particular on knowledge and practice accepted by the research community). This body could be attached to the Council of Europe but also be given regulatory tasks. "]
["Consumers","France","Union nationale des associations familiales (UNAF)",1,null,null,1,null,null,null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"Hence, it may be both in the interest of insurers and insurance applicants that questionnaires meet certain qualitative criteria so that they are an appropriate tool for providing accurate information relevant to the insurance contract, without interfering disproportionately with the private life of the applicant (DH-BIO/INF(2012)1, page 11, para 46).",null,1,null,null,1,null,"The BdV advocates the monitoring has to be made by a legal organization, either by the insurance supervisory authority, or by an existing consumer organization like Bundesverband Verbraucherzentralen in Germany, or by a completely new state institution."]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,null,1,null,null,null,1,null,"Public supervisory bodies should be set up."]
["Insurance","Netherlands","Achmea",null,1,"The insured pays the price of any costly activity. Monitoring is costly. In case of conflict, the applicant should be able to deliver his/her case to an Ombudsman with sufficient authority to force adherence. ",null,1,"See our previous comments: no monitoring. ",1,null,"The first step the applicant should take is always to file a complaint. Every insurance company should have a special department for complaints.","Ombudsman with sufficient authority.  "]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"The insured pays the price of any costly activity. Monitoring is costly. In case of conflict, the applicant should be able to deliver his/her case to an Ombudsman with sufficient authority to force adherence. ",null,1,"See our previous comments: no monitoring.",1,null,"The first step the applicant should take is always to file a complaint. Every insurance company should have a special department for complaints.","Ombudsman with sufficient authority."]
["Insurance","Netherlands","Nationale Nederlanden/ING",null,1,"Sounds bureaucratic,"]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"This is already being done.  No outside agency has the knowledge or experience to do this better than the insurer.",null,1,"This is already being done.  No outside agency has the knowledge or experience to do this better than the insurer.",null,1,"I'm not sure what this means.","Insurers already monitor their own underwriting practices.  No outside agency has the knowledge of experience to do this better than the insurer."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"This depends upon what exactly is meant by \"Underwriting practices\" and \"fundamental principles\". With regards to fairness and reasonableness of underwriting decisions, in the UK it is already enforced under the Equality Act 2010.\nFurther, there is a financial services regulatory framework by which insurers must comply. Depending on whether the issue relates to an application or a completed insurance contract, consumers have options to ensure appropriate practice is applied. For instance, in the UK there is the Financial Ombudsman Services, the Financial Services Authority and the courts. Specifically on genetics, the ABI on behalf of its members has established a (free to consumers) arbitration service for complaints against insurers relating to the Concordat and Moratorium. These options are available where the consumer is not satisfied after their complaint is handled by the insurer, and together ensure adherence to good underwriting practice. In terms of genetics, the ABI runs a compliance regime for its members to ensure insurers are correctly applying the Concordat and Moratorium. This regime includes providing opportunities for Nominated Genetics Underwriters to learn from industry best practice and maintain good working knowledge of developments in genetics.\nWe also make the point that a competitive insurance market, such as the UK's, encourages insurers to adopt best practice and consumers to shop around.",null,1,"See our previous comments. ",null,1,"The vast majority of insurers in the UK have underwriting philosophy documents that detail their practices and underwriting standards. Regulatory requirements and good practice mean that compliance is regularly monitored through internal audits and audits undertaken by reinsurers.\nBecause the underwriting philosophy documents are core to the insurer's business, there are confidentiality and competition requirements which makes it inappropriate, and potentially illegal, for an insurer to share the documents widely."]
[]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"An internal monitoring by insurers of their own UW-decisions is already ensured. Insurers follow strictly their UW-principles and guidelines given by their reinsurer and their own supplementary UW-principles and guidelines. Otherwise an adequate risk management and adequate premiums and benefits as required by supervisory rules would not be fulfilled. Therefore these issues are an exclusive obligation of the insurers themself and should not be monitored by an external institution (except from dispute cases). That insurers fulfil these supervisory requirements is controlled by the insurance supervisory authorities. An additional  institution is neither necessary nor reasonable.  ",null,1,"An ombudsman is reasonable to settle disputes but not to monitor UW-principles and their adherence.",null,null,"Every insurance company should have a desk as the first place where an applicant can file a complaint.","See previous answers."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Monitoring implies fixed requirements or standards of underwriting, but there are in fact many different models, e.g. which balance more underwriting with lower price and vice versa. There are also different goals of underwriting, e.g. some companies offer a higher base price but try to include more policy holders in that price, others especially in highly competitive markets aim for a very cheap base price, but then need to ensure a higher level of underwriting to qualify for this price. Neither model is better than the other, but the underwriting needs to be different for each, so fixed standards cannot be applied. Impairments that impact the commercial freedom to price and underwrite will result in higher prices, which ultimately will lead to lower availability, affordability and consumer choice. In addition the costs and difficulties of independently applying such monitoring would be  significant for minimal additional value; it is already the case that if a company is out of line too much in their underwriting practices, they will either incur underwriting losses, or lose too many customers due to overrating. Reinsurers play an important role through their auditing of insurance companies to ensure adherence to underwriting principles, something they are uniquely placed to do as they would normally have a thorough understanding of the business in question as well as the fundamentals behind underwriting ratings.",null,1,"Not necessary or practical for reasons stated, i.e. already enforced by market competition and audited by reinsurers or in some cases by independent consultants. ",null,1,"Insurers already have a business incentive to ensure appropriateness of underwriting, no additional body required. Rating too high loses clients, rating too low loses profitability, so each insurer invests heavily in its staff, its training, its systems, in manuals, in auditing and in monitoring their portfolio post issue to detect any deviations before they prove too costly.    "]
[]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"For reasons of deontology and equity.",1,null,"Perhaps a mediating body, although this type of body is generally reserved for conflict situations and attempting to reach friendly settlements. ",null,1,"Impartiality is crucial.","A specific body either answering to a Ministry (the Ministry of Finance?) or with the status of an independent authority (which has a specific status in France)."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1,null,null,1,null,null,null,1,null,"By a joint insurance company body or a prudential supervisor (an independent administrative authority without legal personality, which supervises banking and insurance activity in France)."]
["Medical professionals","Luxembourg","Collège Médical",1,null,null,1,null,null,null,1,"Because of the risk of bias.","By the insurance profession’s professional standards body."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"As mentioned previously, there must be a system of oversight in place. ",null,null,"Uncertain how a mediating body would fulfil this mandate.  ",null,1,"It would be important to achieve consistency across the industry, ensuring that each organization is adhering to established standards, providing transparency.","An independent umbrella organization that provides oversight for the insurance industry overall. "]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,null,1,null,"Neutral commission.",null,1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1,null,null,1,null,null,null,1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,null,1,null,null,null,1,"The body charged with monitoring adherence of underwriting to fundamental principles should be independent to avoid any charge of a potential conflict of interests."]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,null,1,null,null,null,1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"The company should have established guidelines for the underwriter to follow and these should be monitored regularly in a regulated quality assurance system.",1,null,"A mediating body might be needed for external supervision that the company follows agreed conditions.",1,null,"As a part of the internal quality system. An external review system should also be in place for monitoring purposes and for disputes.","By an external body, e.g. a certification body for quality control. This would lead to a ISO 9000 or similar certification of the process."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"External audit.",1,null,null,null,1]
["Universities","Hungary","Central European University, Budapest",1,null,null,1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"This would ensure transparency in the insurance underwriting process.  It would also promote protection of fundamental human rights, in particular, the right to privacy, by ensuring that insurance companies uphold an individual's rights.  Monitoring of underwriting practices would also ensure that insurers conduct their business with fairness, and would ensure against any unfair, inequitable practices, or any discriminatory use of personal information.",1,null,"Perhaps an independent monitoring body that would oversee transparency in the insurance industry in relation to underwriting practices, ensure compliance with the relevant legislation, and address any issues arising from the perspective of both the insurance company and the insurance applicant.",null,1,"It is important to ensure that the monitoring mechanism is independent and objective, having regard to the interests of both the insurance company and the insurance applicant.  A body coming under the insurance company would be inappropriate and potentially biased in favour of the insurance company and its interests. ","It is important to re-affirm the relevance of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), and its impact on this area, and on the area of human rights law generally.  Article 33 of the CRPD requires the provision of an independent monitoring mechanism to promote, protect and monitor the implementation of the CRPD. In light of the individual and societal implications of unfair, insurance practices (in particular, the potential for abuse of genetic technology), there is a risk that this will lead to not only discrimination against persons with disabilities, elderly persons and others, but will also lead to the further exclusion of persons with disabilities from education and health services as well as from social and political life.  Ultimately there is a risk that individuals will become segregated according to genetic characteristics, potentially leading to the creation of a genetic underclass. In consideration of the potential for abuse (particularly for persons with disabilities) and the fundamental human rights at stake, it is suggested that an appropriate monitoring body in this context might be one as provided for under Article 33, CRPD."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1,null,null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1,null,null,1,null,null,null,1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,null,1,null,"An independent public authority, composed of experts from the fields of health, genetics and commerce would be an appropriate monitoring body.  ",null,1]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"To give guarantees to both parties.",1,null,"Mediating body should facilitate the agreement between the both parties."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,null,1,null,null,null,1,null,"A separate body."]

{"sheet":"Q22","index":25,"n_rows":38,"n_cols":4,"rows_kept":38,"cut":false,"hidden":false,"merged":[[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,1,3]]}
["Activity sector","Country","Organisation","22. Which other measures should be taken by insurers to ensure transparency in the process of evaluating and transposing the relevant data in terms of actuarial risks?"]
[]
["Patients","Europe","Alzheimer Europe ","Obligatory continuing education and assessment of employees to ensure that they are up to date with the latest advances and regular ad hoc monitoring of individual cases by the independent body mentioned in 21.c without advance warning to ensure that decisions for individual applicants are justified. "]
["Patients","Europe","Autism-Europe"]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS","See answers to questions 29 et seq. The process of evaluating and transposing data requires as much openness and transparency as possible."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé","Public dissemination and participation by users’ representatives."]
["Consumers","France","Confédération syndicale des familles (CSF)","One promising line of enquiry may be the (compulsory) publication of actuarial procedures. This would force insurers to act as closely as possible in accordance with the relevant standards. It would also enable health professionals and scientists to be able to criticise practices and calculations (if there is any reason to object). "]
["Consumers","France","Union nationale des associations familiales (UNAF)","Public dissemination, participation by users' representatives."]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]","Data must be adequate, relevant and non-excessive (proportional) vis-à-vis the purposes for which they are stored; and data must be accurate (DH-BIO/INF(2012)1, page 17, paras 81-84)."]
["Unions","Europe","Confédération Européenne des Syndicats"]
["Insurance","Netherlands","Achmea","Adverse selection and misuse by competitors can ruin insurance companies, if they are obliged to publish their actuarial experience. Insurance doctors are obliged to work evidence-based. Their assessment is based on the same systematic reviews and meta-analyses as the assessment of clinicians, with some important differences: \nClinicians assess in (a) incident cases, the (b) absolute pre- and post-test risks; (c) disease-specific adverse events; (d) relative (event-free) survival to (e) a hospital population or the general population. While insurance doctors assess in (a) prevalent cases, the (b) relative risks; (c) all-cause adverse events; (d) relative morbidity, mortality, and (e) disability in relation to  the insured population (with lower rates than the general population). \nThese differences lead to misunderstanding of the reasons for higher premiums or refusal. So the problem is not that insurance doctors assess the risks wrongfully, but that the clinicians are not educated in insurance medicine."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)","Adverse selection and misuse by competitors can ruin insurance companies, if they are obliged to publish their actuarial experience. Insurance doctors are obliged to work evidence-based. Their assessment is based on the same systematic reviews and meta-analyses as the assessment of clinicians, with some important differences: \nClinicians assess in (a) incident cases, the (b) absolute pre- and post-test risks; (c) disease-specific adverse events; (d) relative (event-free) survival to a hospital population or (e) to the general population. While insurance doctors assess in (a) prevalent cases, the (b) relative risks; (c) all-cause adverse events; (d) relative morbidity, mortality, and (e) disability in relation to the insured population (with lower rates than the general population). These differences lead to misunderstanding of the reasons for higher premiums or refusal. So the problem is not that insurance doctors assess the risks wrongfully, but that the clinicians are not educated in insurance medicine."]
["Insurance","Netherlands","Nationale Nederlanden/ING","Making and keeping a decision sheet for risk estimation"]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.","Transparency is already available to a point that is reasonable between the insurer and the applicant.  Further intrusion by an outside agency will impair the ability of the insurer to conduct its business."]
["Insurance","United Kingdom","Association of British Insurers - ABI","Where appropriate an insurer should provide references to the evidence base that has been used in arriving at an underwriting decision.\nHowever, insurers must be able to balance transparency requirements against the need to be competitive (and therefore maintain the confidentiality of commercially sensitive data). Insurers must also guard against individuals 'gaming' the system through misuse of information provided."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re","Munich Re regularly produces Risk reviews on selected impairments giving an insight on the research results of the recent updating of their underwriting guidelines, thus allowing transparency to a limited extent (because of intellectual  property of Munich Re's time consuming research) . An official publication is not feasible due to the reasons just mentioned and different risk appetites (steered by Solvency II) of the particular direct  insurance companies (competition!) "]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited","Not so much from insurers, but a better financial education of the public starting in schools would be of benefit for improved understanding of the process. Some insurers provide general information sheets on particular common medical conditions, such as diabetes, and these are given out at point of sale after a disclosure as it ensures better understanding of any eventual rating and therefore improves chances of the offer being taken up. The ability of insurers to do this, however, is very much driven by the sales environment and support of the agent/broker."]
["Medical professionals","France","Académie nationale de médecine (France)","Reasons should be given for all decisions relating to the insurance application or the rejection thereof. Insurance applicants should be allowed to consult their file with the insurers."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)","No reply."]
["Medical professionals","Luxembourg","Collège Médical","The questionnaire required to calculate risks should be drawn up on the basis of objective and relevant criteria."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors","With respect to any type of genetic testing, not just predictive, specific consultation with specialists in genetics (both physicians and genetic counsellors) would be essential to ensure appropriate interpretation and evaluation of the relevant data."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]","Adequate legal regulations."]
["Geneticists","Latvia","Latvian Society of Medical Genetics"]
["Geneticists","United Kingdom","PHG Foundation "]
["Geneticists","France","Fédération Française de Génétique Humaine","Publication of evaluation procedures."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n","The transparency policy should be made public in a way that makes it possible for the applicant to compare the policies of different companies, i.e. in a standardised easily accessible format."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)","Collaborate with public HTA (Healthy Technology Assessment) organisations/bodies on issues related to clinical validity and utility. Support independent research in these areas, e.g. by setting up grants where all applications are evaluated after high scientific standards. "]
["Universities","Hungary","Central European University, Budapest"]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland","Training courses could be carried out for insurers, to educate as to the rights of insurance applicants and the applicable laws.  Particular attention could be paid to the data protection legislation and the importance of ensuring privacy and confidentiality in the underwriting process.  Training could also include details on the correct procedures in relation to the collection and processing of health data, particularly taking account of advancing scientific and genetic technology and the increasingly use of the internet (via which personal health data can be easily transmitted)."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\"."]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]","None."]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health"]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission","Insurers should provide evidence on compliance with the data protection legal requirements. Relevant information should be included in the contracts in understandable wording, along with the contact details of the monitoring public body (see above)."]
["Consultative bodies","Spain","Spanish Bioethics Committee","To publish the rejected data by year."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL","The persons concerned must be informed in accordance with Article 32 of the act referred to in question 1. Insurance companies should also ensure that evaluation processes are transparent by making information documents available at their offices or on their websites."]

{"sheet":"Q23","index":26,"n_rows":38,"n_cols":5,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,4],[31,3,31,4],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,4],[16,3,16,4],[13,3,13,4]]}
["Activity sector","Country","Organisation","23. Which are the measures to be taken by insurers:"]
[null,null,null,"a. to remain abreast of the latest scientific developments in the field of predictive medicine?","b. to benefit from the appropriate competences to ensure proper interpretation of the data to be processed?"]
["Patients","Europe","Alzheimer Europe ","It should be possible for the independent monitoring body to access the underwriting manuals being used by insurers to ensure that they are up to date and that the guidelines are evidence based.","Yes. "]
["Patients","Europe","Autism-Europe",null,"The limited predictive value of the data with regard to the  future development of a disease requires fair interpretation."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS","Insurers must do everything possible to keep abreast of latest developments and apply this knowledge and have access to the appropriate expertise to be able to interpret data properly. Complete transparency is the key.","Idem."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé","Taking account of international literature and studies.","Appointing members of academic societies designated by the latter as skilled advisors."]
["Consumers","France","Confédération syndicale des familles (CSF)","Our association does not take any stance on this issue. Insurers must keep themselves informed. It is for them to decide how to go about this.","It is for insurers themselves to determine how to interpret the data they must process correctly. What is essential is that they have the skill to do so."]
["Consumers","France","Union nationale des associations familiales (UNAF)","Taking account of international literature on the subject.","Setting up and taking advice from a scientific committee."]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]","Scientific validity is established by determining the sensitivity, specificity and reliability of a specific test to measure an indicator. As a result, the scientific validity of a medical test may be described as its capacity to adequately detect a particular indicator (DH-BIO/INF(2012)1, page 21, para 106). It is reasonable to assume that High Throughput Sequencing (HTS) technologies will little by little form an integral part of clinical practice. This technological progress in clinical practice should definitely be taken into account in examining the potential use by insurers of predictive genetic health data (DH-BIO/INF(2012)1, page 19, p.92).","It has to be assured that only actuarially proofed correlations between the genetic predispositions and the probability of insured loss will be taken into account. The knowledge of predictive medicine often progresses more quickly than actuarial laws. Therefore this medical knowledge is wrong more often, too."]
["Unions","Europe","Confédération Européenne des Syndicats","This question does not form part of my remit.","It is not just a question of interpreting the data properly. It is important to ensure that the data collection process and the consequences of using this data do not undermine fundamental rights."]
["Insurance","Netherlands","Achmea","Special teams of insurance doctors and actuaries perform and collect systematic reviews and meta-analyses to create guidelines for medical underwriting. These are revised regularly. However, as underwriting concerns prevalent cases, most applicants will have received treatment that is not evidence-based. Applying the very newest scientific developments would therefore be scientifically incorrect, and thus obsolete. This is the reason why insurers wait for systematic reviews and meta-analyses and study their own population: as long as new developments are not implemented in daily clinical practice, they have no value whatsoever in insurance medicine. Many times, the insurers are more abreast than clinicians and have to wait for the latter to implement new therapy guidelines.","Insurance underwriting is diagnostic and prognostic testing in a specific screening situation with adverse selection of prevalent cases. As it concerns insurability, the key competences are of an actuarial nature. Insurance companies use them already, as they employ both actuaries and insurance doctors. The latter should be trained in clinical epidemiology or insurance medicine, depending on the  type of insurances involved. Clinicians miss most of these competences."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)","Special teams of insurance doctors and actuaries perform and collect systematic reviews and meta-analyses to create guidelines for medical underwriting. These are revised regularly. However, as underwriting concerns prevalent cases, most applicants will have received treatment that is not evidence-based. Applying the very newest scientific developments would therefore be scientifically incorrect, and thus obsolete. This is the reason why insurers wait for systematic reviews and meta-analyses and study their own population: as long as new developments are not implemented in daily clinical practice, they have no value whatsoever in insurance medicine. Many times, the insurers are more abreast than clinicians and have to wait for the latter to implement new therapy guidelines.","Insurance underwriting is diagnostic and prognostic testing in a specific screening situation with adverse selection of prevalent cases. As it concerns insurability, the key competences are of an actuarial nature. Insurance companies use them already, as they employ both actuaries and insurance doctors. The latter should be trained in clinical epidemiology or insurance medicine, depending on the  type of insurances involved. Clinicians miss most of these competences."]
["Insurance","Netherlands","Nationale Nederlanden/ING","Employing qualified medical advisors."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.","This is already being done by reinsurers and insurers who invest a great deal of effort in pursuing the latest information.","This is already being done."]
["Insurance","United Kingdom","Association of British Insurers - ABI","Continuing professional development is a well-established requirement and commercial pressures encourage insurers to maintain knowledge of the latest scientific developments. In the UK, insurers conducting relevant class of business have Nominated Genetics Underwriters who are required to take steps to keep up to date with developments in genetics. The ABI Genetics Committee is a route for conveying anything new and particularly relevant, and the ABI host an annual seminar where experts in genetics and medicine present on recent developments.\nIn addition reinsurers play an important role in supporting direct office staff by providing Continuing Professional Development opportunities through seminars, newsletters etc. Reinsurers also have specialist research and development functions in their underwriting departments, with relevant research information passed on and applied in their manuals which are often used by direct insurers in their underwriting practices.","Underwriters are highly trained and undergo on-going assessment and development. In the particular case of an application which includes a genetic test result this is refereed to the Nominated Genetics Underwriter who is a specialist underwriter. The case may also be referred to the Chief Medical Officer who is a qualified medical professional."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re","The heading is wrong - this not the task of actuaries but insurance medical officers. Usually insurers rely on the underwriting manuals and the expert knowhow developed by the reinsurers. The underwriting guidelines are based on extensive analyses of medical data and empirical knowledge, built up over decades and kept up to date at considerable expense. At Munich Re, we have devoted a great deal of effort to continually refine our assessment guidelines over a period going back 100 years. Experts constantly examine the risk situation for new products and diseases. The resultant underwriting guidelines are generally evidence-based and founded on current knowledge.","There is a regular revision  by guidelines which are online updated on the basis of generally accepted standards in clinical medicine and commercially reasonable efforts."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited","The industry, and especially the reinsurers who subsequently provide guidance to insurers, invest heavily in keeping abreast of the latest developments in all areas of medicine, as offering ratings which best match the risk for that individual is not only fair, but is also good business. ","Well-qualified and experienced individuals with the right combination of insurance knowledge, medical knowledge and statistical abilities are highly prized by insurers, and there is already a strong focus on educating particularly the actuaries in how to interpret medical studies and similar for insurance purposes."]
["Medical professionals","France","Académie nationale de médecine (France)","It is for insurers to employ medical staff with the necessary skills, whom they can call on for advice on all medical and scientific matters.  ","Same answer as for a."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)","Each insurance company should have its own skilled in-house physician.","Each insurance company should have its own skilled in-house physician."]
["Medical professionals","Luxembourg","Collège Médical","Regular consultation of professionals working in this field.","Seeking assistance from professionals with the medical skills to evaluate from the data collected the probability that the risk will be realised."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors","Organizations must have access to appropriate consultative staff, and undertake regular review of current clinical practice standards, and scientific advances. ","As in a.; in addition, the appropriate physician involved in the clinical care of the applicant should be engaged to provide accurate interpretation of predictive test results in light of the complete clinical picture."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]","Contract geneticists.","Contract geneticists."]
["Geneticists","Latvia","Latvian Society of Medical Genetics","According to national guidelines."]
["Geneticists","United Kingdom","PHG Foundation ","This field is developing exponentially, and new genotype/phenotype associations are being reported in the scientific literature on a daily basis. It will be challenging for insurers to keep up to date with the latest scientific developments. One approach is for national professional bodies (such as the Association of British Insurers in the UK) to develop strong links with the authorities that validate predictive genetic tests for clinical use (such as the UKGTN). At present some 575 tests have been validated using this process in the UK. This could foster a harmonised approach - which is based upon a robust evidence base. However, one disadvantage is that there may be predictive genetic tests in local clinical use, that fall outside this validation process.","It should be a requirement for insurance companies to have appropriately qualified and certified clinical geneticists on their staff - who can be used as a source of appropriate expertise."]
["Geneticists","France","Fédération Française de Génétique Humaine","Training in presymptomatic medical genetics and predictive medicine for insurance company doctors through post-graduate and continuing education.","Involvement of independent geneticists whose expertise is acknowledged at institutional level (by universities or academic societies)."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n","Insurers should only rely on validated information used by accredited health care. Insurers should follow scientific developments and in collaboration with health care authorities find ways to incorporate scientific advances in underwriting,","Continuous training and education of the personnel involved in underwriting."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)","Support HTA initiatives and an independent scientific advisory board.","Support science in this field, e.g. through grants and an independent scientific advisory board (maybe shared by many companies)."]
["Universities","Hungary","Central European University, Budapest","Yes, it is relevant, genetic testing is a rapidly changing field, therefore it is essential to follow literature, and accepted new procedures","Yes, it is relevant as well, genetics is a rapidly changing field, therefore  it is essential to follow literature, and accepted new procedures as it may influence  the interpretation."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland","Science and medicine are advancing rapidly, particularly with  regard to genetic technology. Regular discoveries are being made in relation to disease, testing and treatment, which may have implications for an individual's health, and consequently, for obtaining insurance.  For the purposes of the underwriting process (and in conjunction with the principles of reliability and relevance), it is important that insurers keep up to date with the latest scientific developments in this area, perhaps by engaging in appropriate training and education.","Often there is a complex variety of factors that contribute towards ascertaining the current and future health of an individual.  Medical tests are open to erroneous interpretation.  If data is misinterpreted or overestimated, this may adversely affect the insurance applicant and his/her access to insurance."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]","Participate in meetings, read the respective literature.","Consult with external experts."]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health","Consultation with the specialists in different fields of medicine.","See answer to 23.a."]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission","Seminars with the participation of medical and genetic experts, organized on a periodical basis by the national association of insurers, could be an appropriate measure. ","Same as in question a."]
["Consultative bodies","Spain","Spanish Bioethics Committee",null,"Because it is important that the information is reliable.     "]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL","Insurance companies must set up appropriate means of keeping abreast of the latest scientific developments (monitoring etc.).","Insurance companies must have access to the appropriate expertise to interpret data correctly and update their knowledge base."]

{"sheet":"Q24","index":27,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","24. Insurers should also systematically include in actuarial basis, data on factors positively affecting the health risks. Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null," If people are penalized for factors which increase risk, they should benefit in the case of factors which decrease risk (e.g. lifestyle factors, biological/physical features which are relatively fixed and exposure or lack of exposure to various events or factors). These should be given the same importance as risk factors when calculating health risk. Such information should be included in the actuarial basis. "]
["Patients","Europe","Autism-Europe",1,null,"Predictive data may not only relate to the aggravation of a risk, but also to its reduction. For instance, the disclosure of a genetic or environmental risk could lead to positive change in the lifestyle or undergoing regular medical examination and follow-up, reducing the predicted risk for developing a disease."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"Because everybody knows how much medicine is evolving in current health care facilities but also in terms of future prospects."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"In so far as it is entirely reasonable, considering that factors with a negative impact are taken into account, that those with positive effects should also be taken into account."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"Insurers, in pursuing the best possible assessment of the risks which prospective clients carry, are interested in all data likely to provide information on their future health. However, these data may not only relate to the aggravation of a risk, but also to its reduction. Still, it is difficult to say if current actuarial tables also consider, for example, the positive changes that can follow the disclosure of genetic test results, e.g. change in lifestyle (healthy diet, more active lifestyle etc.) (DH-BIO/INF(2012)1, page 23, p. 121.) It must be prohibited that data on factors positively affecting the health risks have the negative consequence for the applicant that his individual premiums increase (or future pension annuities decrease). "]
["Unions","Europe","Confédération Européenne des Syndicats",null,1,"A clear distinction should be made between the respective roles of insurance and the organisations responsible for promoting health."]
["Insurance","Netherlands","Achmea",1,null,"This is daily practice! Insurers need an accurate assessment of the risk, so positive data are indispensable – as in medicine in general. "]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"This is daily practice! Insurers need an accurate assessment of the risk, so positive data are indispensable – as in medicine in general. "]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"Example: a negative coronary angiography in older age, non smoking."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",1,null,"This is already being done, and can be seen in the insurance products that have the lowest premiums for the healthiest risks."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"Insurers do often take into account factors that positively affect health risks, both at a population group level and at an individual level."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"Both negative and positive prognostic factors are applied during the risk assessment."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Insurers already include expected life expectancy improvements in their base pricing. At an individual level, we would also include credits for risk factors related to particular medical conditions, e.g. the rating for many medical conditions will be lower if that individual does not smoke, demonstrates good exercise capacity, and/or shows through good disease control that they comply well with treatment and other medical advice. "]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"Positive effects on risks could indeed also be taken into account (e.g. non-smokers)."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"Example 1: an individual from a family with a known genetic change that imparts increased risk of disease, who has had genetic testing that proves that they are not a carrier of that familial mutation.  Example 2: an individual who has taken appropriate measures to significantly reduce the risk of disease (e.g. prophylactic surgery). "]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"[I assume that the use of 'positive' here means factors that mitigate against ill-health such as being a normal weight, taking exercise, not smoking and having a moderate alcohol consumption.]"]
["Geneticists","France","Fédération Française de Génétique Humaine",null,1,"Odds ratios are not reliable as their statistical significance does not allow them to be applied to individuals."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"If negative risk factors are to be included also the positive should be."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"This would give individuals the opportunity to  disclose positive factors that may have a favourable affect on ascertaining health risks (for example, factors such as healthy diet, lifestyle and environment), and may increase their access to insurance and reduce premiums.  The consideration and inclusion of these factors may also give the insurance company a more realistic and true insight into an individual's health, thereby reflecting the fundamental principles of reliability and relevance."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"Regarding especially genetic diseases, only for very serious multifactorial diseases, for which robust scientific data indicating a high possibility of manifestation is available. "]
["Consultative bodies","Spain","Spanish Bioethics Committee",null,1,"Due to the difficulties of establishing the risks to health accurately."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",null,1," "]

{"sheet":"Q25","index":28,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","25. Insurers should seek individual data on factors that may positively affect the individual risks evaluation. Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,"The offer of insurance is made to an individual even though the calculations are based on data relating to groups of people in society. If insurers are to include factors positively affecting health risks in the actuarial basis, for this to have a positive impact they must also seek such information from individuals seeking insurance.  "]
["Patients","Europe","Autism-Europe",1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"Insurers must also take positive developments into account."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",null,1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"If it is assumed that a very large majority of insurance applicants and/or insured persons do not understand the implications of health questionnaires and their raison d’être, then it is clearly for the insurers to identify individual factors with positive effects. It is only when insurance applicants finally understand the principles of insurance and the implications of medical data that it will be for them to provide personal details with positive consequences."]
["Consumers","France","Union nationale des associations familiales (UNAF)",null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"This depends particularly on the specifically ascertainable level of correlation between the sign observed and the disease in question (e.g. observation of a renal cyst is not specific to polycystic kidney disease)."]
["Unions","Europe","Confédération Européenne des Syndicats",null,1]
["Insurance","Netherlands","Achmea",1,null,"This is daily practice! Insurers need an accurate assessment of the risk, so positive data are indispensable – as in medicine in general.    "]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"This is daily practice! Insurers need an accurate assessment of the risk, so positive data are indispensable – as in medicine in general.    "]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"Otherwise question 24 is not possible."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",1,null,"This is already being done, and can be seen in the insurance products that have the lowest premiums for the healthiest risks."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"Underwriters will take note of a range of factors, which could include whether someone follows medical advice well, complies with treatment, attends appointments etc. Also if there is an adverse family history but the applicant chooses to disclose a negative genetic test, this can be taken into account. This is an example of where disclosure of genetic test results can positively affect the individual's insurance application. We do not agree with the implication here that an insurer should be required to ask people to undergo testing to demonstrate a lower risk."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",1,null,"Individual risk assessment is based on statistics and empirical medical findings with regard to age and diseases - irrespective of whether these factors are negative or positive. They are consequently of fundamental importance for our business model."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"It is difficult for insurers to get reliable data on factors such as diet etc. and, anyway, to reward some individuals for such behavioural factors means someone else has to pay a higher price, as in the end the same number of claims may be expected. This already happens with non-smokers who get a discount to an aggregate price, but of course smokers must then pay more otherwise inadequate premiums are received to cover the claims. Customers are also often not comfortable providing extensive details of their lifestyle to insurers. As indicated in our response to question 24, however, for insurance applicants with rateable diseases, there are already processes in place to reward those who look after their disease better."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"See answer to question 24."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1,null,"Provided that the lack of positive factors is not considered to give rise to a risk."]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"Insurers should not only include data that has a negative impact on health."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,"See our response to question 8: in non-medical context this could be an advantage for those who seek for genetic testing to prevent illness under known disease susceptibility."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"[As in our response to question 24. The question isn't worded well - and the Consultation Document doesn't clarify this point]."]
["Geneticists","France","Fédération Française de Génétique Humaine",null,1,"Odds ratios are not reliable as their statistical significance does not allow them to be applied to individuals."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities",1,null,"As in underwriting the goal is to find the optimal evaluation for a certain person, positive as well as negative factors should be equally evaluated."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"This may be desired in case of life style changes."]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"See our response to question 24. This practice would give insurance applicants the opportunity to disclose positive risk factors that may increase their insurability and provide a true reflection of their current health status."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"Same as in our response to question 24, and only on the basis of specific consent of the person concerned."]
["Consultative bodies","Spain","Spanish Bioethics Committee",null,1,"This role corresponds to the one of researchers and general practitioners in any case."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",null,1,"This would lead to a reduction in premiums and give rise to a risk of \"positive discrimination\"."]

{"sheet":"Q26","index":29,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","26. According to an established principle, health-related data should not be processed further for purposes incompatible with the original purpose of the collection. In accordance with this principle, health-related data collected for the purpose of a contract with a person should not be used for a contract with a member of this person’s family. Do you agree with this proposal ?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1]
["Patients","Europe","Autism-Europe",1,null,"Each applicant must give his/her consent to the use of personal health-related data."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"This is crucial. This use of data is completely prohibited and, moreover, takes absolutely no account of changes in family set-up (broken and reconstituted families)."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"Firstly, insurance applicants must give their consent for a third party to pass on medical data concerning them (this clearly applies in cases when insurers look for relatives of applicants in their files). They must not be able to use them as this would amount to a breach of trust on their part."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"There are only two major disease areas in which family history has been deemed particularly important in risk assessment by insurers: cardiovascular disease and cancer (DH-BIO/INF(2012)1, page 24, para 129)."]
["Unions","Europe","Confédération Européenne des Syndicats",1]
["Insurance","Netherlands","Achmea",1,null,"Indeed, public health screening programmes that approach relatives of patients with hereditary diseases should be prohibited! The information on heredity is collected for diagnosis and treatment of the patients themselves, and using these data for screening of relatives is highly unethical."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"Indeed, public health screening programmes that approach relatives of patients with hereditary diseases should be prohibited! The information on heredity is collected for diagnosis and treatment of the patients themselves, and using these data for screening of relatives is highly unethical."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"There will be situations where information from one family member should be applied to the risk assessment of other family members applying for insurance. Every applicant already has signed a release form for all risk assessment information to be shared with the insurer from any source. This interference by an outside agency impairs the contractual relationship between the applicant and the insurer by inappropriately limiting information to be shared."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"The UK Data Protection Act, which insurers must comply with, requires that personal data shall be obtained only for one or more specified and lawful purposes, and not be further processed in any manner incompatible with that purpose or those purposes."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"This question is difficult to understand. Data of existing insurance contracts of third persons are not considered in the underwriting process of the applicant."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"It is not, and would anyway not be allowed under existing data protection laws."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"It should not be possible to extend use beyond the insured person. If this were tolerated, where would it end? If another family member applies for insurance, they should be asked the same questions. The insurance application process is personal and exclusive. Data which insurers already have concerning a relative are not taken into account. "]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"Use of information collected from one person and used for a contract with another family member is a violation of privacy and confidentiality. In addition, the interpretation of one person's data for another family member has the potential for inaccuracy, inconsistency and incorrect interpretation (e.g. the expansion of an intermediate allele for Huntington disease into the affected range in a single family member might inappropriately and incorrectly place risk on other family members)."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",null,1,"Again the question is poorly worded and conflates two sources of data for which different considerations might apply. The overarching principle is valid, but the relevant question here is whether use for insurance is regarded as an incompatible purpose. Similar arguments have also been used when discussing whether health-related data collected in clinical settings should be used for research purposes. The doctrine of 'no surprises' has been suggested as the basis for determining whether or not data processed for one purpose can be validly processed for another purpose. In the context of clinical care delivered within a clinical genetics setting, it is sometimes argued that the use of health-related data from one family member for the benefit of another is consistent with the 'no surprises' doctrine. The use of the health-related data collected for the purpose of insuring one person and used to support applications from other family members falls foul of this principle in two respects. If the data is collected for the purpose of health care, it may be used for an incompatible purpose in that it is applied to an insurance decision, and used to inform an actuarial decision for another family member. If however the data is collected within a questionnaire, which contains a clear statement that information about other family members may be used to used to process claims about them, then this might be acceptable. Indeed explicit consent might even be sought from family members for the use of their data, if this were extremely sensitive data, or if disclosure of such data could materially influence the insurance decisions made in relation to other family members."]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities",1,null,"Each case is by itself unique and only data specifically collected for this purpose may be used. It is a part of the privacy or the patient files."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"Firstly, in accordance with data protection legislation, health-related data must only be retained for a certain specific period, and for specified, explicit and legitimate purposes. As health-related data is sensitive personal data, an individual's express and informed consent is required for any collection or processing of this information. In order to use the health-related information to a draw up a contract for a member of an individual's family, it is necessary to obtain the relevant consent. In addition, some family members are not genetically related, and therefore use of such information may not reliably reflect the status of family members. In the absence of consent, use of health-related data is a breach of privacy and confidentiality. Any such use of health data would be in violation of the duty of good faith, which underlies the insurance industry."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"Even genetic information that may be common for relatives should not be processed without specific consent of the person concerned."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"To ensure data privacy. Moreover, the situation of each person is different from the other family members."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"Data collected in the course of an application for an insurance contract must not be used for any other purpose."]

{"sheet":"Q27","index":30,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","27. In view of the issues they may raise with regard to the right to respect for private life and that surrounding their authenticity, data collected from the internet should not be used for insurance underwriting. Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1]
["Patients","Europe","Autism-Europe",1,null,"Data from the internet could be false, erroneous, and  posted by a third person."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"This is completely elementary."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"Once again, information must have been obtained openly and fairly. If insurance applicants or insured persons have made statements on a public social network about their state of health, which have an impact on actuarial calculations concerning them, insurers must be able to use this information (albeit making sure that they fulfil their obligation to notify the person concerned). However, no information of this type which has been provided by a third party may be taken into account. Lastly, under no circumstances may insurers acquire such information through companies which offer to sell or exchange records of personal health data obtained through the Internet (as this is an infringement of the legislation on personal data protection). Very heavy penalties should be imposed on states which fail to do everything in their power to prevent such conduct. In this connection, the transfer of data to third-party states should also be totally prohibited (as professionals generally have very little control over the management of data by sub-contractors in third-party states)."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"Nowadays, internet repositories (e.g. personal blogs, Facebook pages) can provide information in relation to the health status of people, or their lifestyle. In addition to issues they may raise with regard to the right to respect for private life, this type of information is open to doubt when it comes to its genuineness, in particular when they come from third parties (DH-BIO/INF(2012)1, page 13, para 62)."]
["Unions","Europe","Confédération Européenne des Syndicats",1]
["Insurance","Netherlands","Achmea",null,1,"People decide for themselves what they keep in a private domain or make available in the public domain. One should not “mother” people, by selectively forbidding the use of this information in the public domain. This censoring does not become a country that claims freedom of speech. The only exception would be the use of information that was placed in the public domain without consent."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"People decide for themselves what they keep in a private domain or make available in the public domain. One should not “mother” people, by selectively forbidding the use of this information in the public domain. This censoring does not become a country that claims freedom of speech. The only exception would be the use of information that was placed in the public domain without consent."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"Internet data can be from very dubious origin or based on rumours."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Every applicant already has signed a release form for all risk assessment information to be collected by an insurer. This interference by an outside agency impairs the contractual relationship between the applicant and the insurer by inappropriately limiting information to be shared."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"We believe that any personal information found on the internet should be verified as authentic before it is used. If it cannot be verified, it should be disregarded. We take the example of a celebrity who has a public history of drug abuse, and therefore does not consider it necessary to disclose this information in their application (because they believe it is known to the insurer already). The insurer would not want to accept the application and then subsequently decline a claim on the basis of non-disclosure, because they could not make use of the information that was publicly available at application stage but which was investigated and proven at claims stage. We consider it is preferable that the insurer authenticates the information with the applicant while at application stage, to avoid a dispute and disappointment at the claims stage. The unintended consequence of this proposal could see people being required to provide more information that they would have originally, as it could prevent insurers from being proactive. For instance, if insurers could not look up company accounts on the internet, companies seeking insurance cover would have to provide that themselves. This requires extra time, effort and expense for the consumer."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"Only if the information was placed in the public domain without consent. Information in the public domain, placed in the public domain by someone, should be regarded as free uncensored information - because otherwise it would not have been placed in the public domain."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Internet based information is generally not considered reliable, and would always need verification, but it may be used to prompt additional questioning or information requests, e.g. a disability claimant who is reported on the internet as just having completed a marathon would prompt additional questioning, the claim itself would not however be stopped solely on the basis of the internet story. The understanding of the phrase \"the internet\" is also changing rapidly as technology progresses and many sales are now done over the internet including the answering of medical questions."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"Only data passed on directly by the applicant or taken from reliable medical examinations may be taken into account."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1,null,"Obtaining data by such means infringes the right to privacy and such information cannot be guaranteed to be authentic. "]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"The accuracy of information collected for insurance underwriting requires a valid and reliable source that can be substantiated. Data collected from the internet could not be held to the same level of scrutiny and oversight as discussed in previous sections of this questionnaire. The same argument would hold for information obtained from social networking sites or other sources of personal information, and may also constitute a potential breach of privacy."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"This seems a sensible proposal at the current time. If this were to be reviewed in the future, then a wide range of internet sources including social networking sites, supermarket loyalty schemes, etc. would need to advise consumers that personal data might be disclosed or sold to insurers. However postcode information is already accessible to insurers - and this provides proxy information about lifestyle and socio-economic status. This policy might be difficult to sustain in the future on the grounds of consistency (and it might be susceptible to judicial review in the future). "]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,"Data collected from the Internet are not reliable."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"Only validated, individually relevant information from medical files can ensure high quality data. Therefore no other sources should be used. "]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"With the advent of the technological age and increasing use of the internet, there is a vast amount of information (relating to a person's health and other personal matters) that is accessible to third parties. Any use of personal information (derived from any source, including the internet) is a breach of data protection legislation if used in the absence of consent. Use of such information in the absence of consent also violates the right to privacy and respect for private life."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"Specific consent of the individual is a paramount requirement."]
["Consultative bodies","Spain","Spanish Bioethics Committee",null,1,"Data collected in the contract should be reported by the applicant."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"There is also a need to rule out all collection of information available on line (such as the information that can be consulted via social networks)."]

{"sheet":"Q28","index":31,"n_rows":38,"n_cols":4,"rows_kept":38,"cut":false,"hidden":false,"merged":[[3,3,3,5],[2,3,2,5],[4,3,4,5],[5,3,5,5],[6,3,6,5],[12,3,12,5],[7,3,7,5],[8,3,8,5],[9,3,9,5],[11,3,11,5],[10,3,10,5],[26,3,26,5],[15,3,15,5],[16,3,16,5],[13,3,13,5],[17,3,17,5],[18,3,18,5],[14,3,14,5],[31,3,31,5],[32,3,32,5],[33,3,33,5],[35,3,35,5],[36,3,36,5],[34,3,34,5],[0,3,1,5],[0,2,1,2],[0,1,1,1],[0,0,1,0],[37,3,37,5],[29,3,29,5],[19,3,19,5],[20,3,20,5],[21,3,21,5],[22,3,22,5],[23,3,23,5],[24,3,24,5],[25,3,25,5],[27,3,27,5],[28,3,28,5],[30,3,30,5]]}
["Activity sector","Country","Organisation","28. In accordance with the data protection instruments, transborder flows of data should require the recipient country to possess at least an equivalent level of privacy protection, in particular regarding sensitive data such as health-related data. What arrangements should be made by the insurance company to comply with this principle?"]
[]
["Patients","Europe","Alzheimer Europe ","They should have to justify their decision to transfer data to a particular country if requested by the applicant and by the independent monitoring body. Applicants should be informed of such transfer and to which country before it occurs so that they can ask for such justification and/or object to such transfer."]
["Patients","Europe","Autism-Europe","Security measures for information systems should be adopted."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS","Communications of this sort should be prohibited, except within strict bounds when a reinsurer intervenes or is asked to contribute to covering certain risks. Contrary to usual practice, such communications should be brought to the attention of the insured person concerned. See Consultation Document DH-BIO/INF(2012)1, Chapter 1.3 “Legal principles”."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé"]
["Consumers","France","Confédération syndicale des familles (CSF)","Insurance companies are absolutely bound to comply with this principle no matter what steps they need to take to do so (including how much they need to spend)."]
["Consumers","France","Union nationale des associations familiales (UNAF)","Compliance with French data processing law."]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]"," In this connection, according to article 2 § 1 of the Additional Protocol to the Data Protection Convention regarding supervisory authorities and transborder data flows, transborder flows of data to a recipient which is not subject to the jurisdiction of a Party are subject to the condition of an adequate level of protection in the recipient country. In this context, it should be noted that the Safe Harbour Privacy Principles established between the European Union and the United States provides some guidance to insurers on how to control transborder flow of health data (DH-BIO/INF(2012)1, page 15, para 71)."]
["Unions","Europe","Confédération Européenne des Syndicats","A binding legal framework should be established."]
["Insurance","Netherlands","Achmea","Insurers only exchange information with the informed consent of the applicant. If the exchange is based on a contract, the contract should provide for compliance."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)","Insurers only exchange information with the informed consent of the applicant. If the exchange is based on a contract, the contract should provide for compliance."]
["Insurance","Netherlands","Nationale Nederlanden/ING","An issue both for sending and receiving medical advisors, responsible for medical safe guarding; some legal measures would help."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.","This is already being done."]
["Insurance","United Kingdom","Association of British Insurers - ABI","As we mentioned in our response to previous questions, there are legal requirements (the Data Protection Act) which set out how information can be transferred (including outside of the country). These requirements must be complied with."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re","The exchange of information is based on a contract, so the contract should provide for compliance with this principle. "]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited","Insurers must comply with all relevant data protection laws, including not sending sensitive data to countries with inadequate data protection standards. For this purpose, European insurers would only consider sending data to countries which have been recognised by the European Commission as having equivalent standards of data protection regulation."]
["Medical professionals","France","Académie nationale de médecine (France)","No data concerning insured persons should circulate without their information and agreement. Data should not be allowed to circulate in countries where privacy is less well protected."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)","There should be a ban on the communication of these data to countries in which data protection regulations provide less protection than European regulations."]
["Medical professionals","Luxembourg","Collège Médical","Insurers must take steps to supervise transborder flows of health-related data using the Safe Harbour confidentiality rules negotiated between the European Union and the United States."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors","It is the responsibility of the insurance company to comply with privacy regulations and underwriting for the insured, no matter where the information flows. There should be a review process upon each new contract with assurance that the re-insurer follows the same level of transparency, compliance with legislation, and oversight as that in the country of origin. The insured/applicant should be made aware of any information that flows to another agency, whether in the same country or not."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]","To engage a certified data protection officer/supervisor; only with the agreement of the applicant concerned."]
["Geneticists","Latvia","Latvian Society of Medical Genetics","Agreement of applicant, and insurance companies in EU must collaborate with companies from countries with appropriate legislation to EU standards for personal data protection."]
["Geneticists","United Kingdom","PHG Foundation ","Companies should adopt secure systems and processes for data protection as for other types of business. Secure pipelines for data transfer should be available. Where possible data should be encrypted and personal identifiers removed to safeguard against possible breaches of security. Staff should be trained in data security and computers should use appropriate levels of password protection."]
["Geneticists","France","Fédération Française de Génétique Humaine","Compliance with medical confidentiality rules as applied to insurance law. Nothing to encourage anyone to carry out genetic predictive tests for the purposes of an insurance contract."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n","The company should be aware of the legal system in countries relevant for receiving data, and  only data needed, e.g. for reassurance should be transmitted. The client should also be made aware of to whom and to which country the data is transferred. The same rules for destruction of data as for the country where data is generated should apply."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)","The insurance company should not be allowed to transfer personal health data (i.e. identifiable data) to countries that have less stringent data protection laws then the country of origin. Data that are anonymized may be allowed."]
["Universities","Hungary","Central European University, Budapest","In order to assess equivalent protection, the National Data Protection Agency/Ombudsman or/and international insurance associations should provide data and criteria for such an assessment."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland","Directive 95/46/EC on the protection of individuals with regard to the processing of personal data and on the free movement of such data provides that each Member State set up an independent national body responsible for the protection of these data. In addition, insurance companies should provide for a system whereby the express, informed consent is obtained from all insurance applicants. It would also be desirable to have a system in place in relation to the retention of health-related data, ensuring that any information is only kept for a certain specified period and in accordance with the specified purpose. These practices would be in accordance with confidentiality requirements and would ensure compliance with the data protection legislation."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]","The insurer shall prove that privacy protection level is equivalent; consent of person concerned."]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health","The insurance companies should make contact with the national supervisory authority of the insurance companies to ensure appropriate level of privacy protection in the insurance companies in each country."]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission","Insurance companies of the recipient country need to collaborate with their local DPA (Data Protection Agency) in order to ensure this requirement. If DPA  does not exist (for non-European countries), a proper measure could be for the insurance companies to provide specific evidence on the level of data protection to the DPA of the data origin country and obtain the required approval. In any case, the role of DPAs is crucial here."]
["Consultative bodies","Spain","Spanish Bioethics Committee","The insurance company must ensure that the data protection requirements included in the Spanish Law are satisfied."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL","When data are transferred outside the European Union to countries which do not protect data properly, measures should be introduced to regulate these transfers such as data transfer contracts following the model contractual clauses proposed by the European Commission and binding company rules."]

{"sheet":"Q29","index":32,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","29. As a general policy rule, regular consultations should be organised between insurers, consumers and other stakeholders (such as physicians, actuaries, government representatives, etc.) with a view to ensuring a well-balanced relationship between the interested parties and increasing transparency towards the public. Do you agree with this proposal?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,"NGOs should be specifically mentioned."]
["Patients","Europe","Autism-Europe",1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"Any consultation of this sort should always be performed on a strictly equal footing between all those concerned, showing, at the least, due regard for the views and interests of each of the parties. The goal must be the constant improvement, in all transparency, of each of these parties’ situations. Each party has its own area of expertise. Patients and patients’ associations have the ability to assess the needs of insured people correctly. Their source of expertise is their experience."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,"Add representatives of patients’ associations to the list."]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"A joint committee is generally a good means of getting associations to interact with professionals. However, in no respect can it replace a regulatory or supervisory body."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1,null,"Including associations of families and parents."]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,"Trade unions should be regarded as stakeholders because both primary and supplementary forms of insurance can be tied up with employment relationships."]
["Insurance","Netherlands","Achmea",1]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1]
["Insurance","Netherlands","Nationale Nederlanden/ING",1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"This is already being done as needed. No further effort is necessary."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"We agree that well-balanced relationships and transparency are important, particularly between the consumer and the insurer who share information for the formation and execution of the insurance contract. We believe that regular dialogue is important, and that consultations can be effective tools. In the UK, the ABI (on behalf of its members) and the Department of Health (on behalf of the UK Government) invite a range of stakeholders to provide their views on the operation of the Concordat and Moratorium when it is reviewed every three years. This is a proportionate and effective way of consulting with stakeholders. We also adopt additional ways to communicate with stakeholders that are effective, transparent and appropriate to the situation. For instance, in between reviews of the Concordat and Moratorium, transparency is supported by making the Concordat and Moratorium available on the ABI website, and by issuing consumer guidance. These are transparency aids that do not require a regular consultation process, and in some cases are better because they are available to consumers at all times."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"This is a lofty project, doing this as a general, regular rule. From the insurance perspective, Munich Re is open for a dialogue, but such a  dialogue has to be organized in an adequate framework. Based on our own experience there is a considerable discrepancy in terms of comprehension of the principles of private insurance which are very often put in the same basket with mandatory insurance, financed by the state. The latter works on totally different principles which private insurance industry cannot be compared with. While ignoring this fact, a dialogue is fairly difficult and sometimes even frustrating, since the various stakeholders run the risk of talking at cross purposes."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"Swiss Re are strong believers in dialogue between all interested parties to enhance understanding and promote solutions. As an example we recently hosted the Getting the Balance Right event for this very purpose and will be hosting the second in this series early in 2013. We have also hosted events on longevity and HIV. In addition Swiss Re has been very active in participating in other events organised by the European Commission and similar organisations to ensure we can provide a better understanding of risk selection and other insurance practices and listen early to concerns which are being expressed. Insurance associations at national and European level are also actively engaged in setting up similar dialogue with interested parties and produce brochures and other  material to help improve public understanding."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"Regular consultation is essential, particularly between insurers and consumers, along with the presence of representatives of the medical profession."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"This is particularly important in the field of genetic testing because of the rapidly evolving and changing nature of the field of clinical genetics and the evolution of new testing methodologies. Consultation with stakeholders should be held regularly to assess and integrate advances in the field into underwriting practice. "]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"Predictive genetic tests have the potential to revolutionise existing practices and there is a need for wide ranging discussions between all relevant stakeholders as to how these challenges should be addressed:\n- in particular in the case of critical illness insurance, there needs to be clarity as to whether a predictive genetic test constitutes a positive diagnosis;\n- when a pay-out might be due (i.e. from birth, the date of predictive testing or when symptoms develop);\n- the extent to which earlier diagnosis on a policy with a limited term might change existing claims or anti-selection rates.\nMore empirical work is needed to clarify whether having a predictive test (including a test that may only confer a small predictive value for a common complex disease such as cancer or diabetes) changes insurance product purchasing behaviour."]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,"Medical experts must have proved themselves through recognised activities within an institution (a university or an academic society) and not have any conflicts of interest."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"The system will only work if fairness and accuracy are guaranteed."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"Such regular consultation would promote further transparency within the insurance industry and among key stakeholders. This consultation would also contribute towards instilling and promoting consumer confidence in the insurance industry, which is necessary for the continued viability of the industry. This consultation process would also ensure that insurers are kept up to date with developments in the legal, medical and scientific fields, including their obligations under relevant legislation (for example, data protection legislation). This would also ensure that insurers are educated as to recent medical developments, for example, advancing genetic technology and what this can reveal. In the absence of education, there is a risk that insurers may overestimate the value and certainty of genetic tests, and genetic information. There is also a risk that insurers may misuse sensitive genetic information, leading to discrimination, breaches of privacy, and potential isolation from society for certain vulnerable individuals. In the context of disability law and the rights of persons with disabilities, the CRPD promotes the active involvement and integration of persons with disabilities in decision-making processes. Article 4.3 specifically provides that in decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"Flexible procedures to avoid bureaucracy need to be established to serve effectively this purpose. A bureaucratic approach of the consultation process creates conditions for market self-regulation on a purely commercial basis."]
["Consultative bodies","Spain","Spanish Bioethics Committee",null,1,"Such inquiries are superfluous and do not increase transparency."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"There must be broad and regular consultation between insurers, doctors and other stakeholders in order, among other things, to regulate the collection and processing of health data."]

{"sheet":"Q30","index":33,"n_rows":39,"n_cols":13,"rows_kept":39,"cut":false,"hidden":false,"merged":[[35,3,35,12],[0,0,2,0],[0,1,2,1],[0,2,2,2],[17,3,17,12],[32,3,32,12],[0,3,0,12],[1,3,1,5],[1,6,1,8],[1,9,1,11],[14,3,14,12]]}
["Activity sector","Country","Organisation","30. In particular, should the following issues be addressed in such consultation process?\n"]
[null,null,null,"a. reliability and relevance of predictive tests before their results, if authorised by national law, can be used by insurers for underwriting?",null,null,"b. health-related data and medical examinations requested by insurers?",null,null,"c. the wording of questionnaires to collect data related to the health of insurance applicants?",null,null,"d. any other issues?"]
[null,null,null,"YES","NO","Comments (if any)","YES","NO","Comments (if any)","YES","NO","Comments (if any)","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,null,1,null,null,1,null,"Lay people and patient organisations, in particular, should be consulted to ensure the level of understanding and readability of questionnaires. "]
["Patients","Europe","Autism-Europe",1,null,null,1,null,null,1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"Prohibited in Belgium.",1,null,null,1,null,"Recent experience in this sphere does not give reason for much enthusiasm."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",null,null,"Predictive tests should not be used for insurance purposes.",1,null,null,1]
["Consumers","France","Confédération syndicale des familles (CSF)",null,null,"We are not in a position to answer the question as it is probably more a matter for scientists, specialist patients’ associations and the like. ",1,null,null,1,null,"Consumer organisations should be consulted on this point as we know very well what it is that consumers do not understand. We are also the only bodies able to imagine how they view contracts. We would therefore like to be consulted on this issue.","We would like to talk with insurance professionals about the consequences of occurrences such as applicants refusing to agree to the “transfer” of personal data (particularly from a third party to the insurer) or the provision of inaccurate medical information."]
["Consumers","France","Union nationale des associations familiales (UNAF)",null,null,"Do not agree that insurers should be allowed to use such tests.",1,null,null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",null,1,"Knowledge is progressing but much research remains to be done before genetic testing can be relied upon to assist with accurate screening for any disorders in a clinical context (DH-BIO/INF(2012)1, page 19, para 96).",1,null,"It may be both in the interest of insurers and insurance applicants that questionnaires meet certain qualitative criteria so that they are an appropriate tool for providing accurate information relevant to the insurance contract, without interfering disproportionately with the private life of the applicant.",1,null,"In this context, consideration should be given in particular to the clarity of questions; vague or complex questions can be misunderstood by applicants who are generally not familiar with medical terminology, and who may thus end up providing inaccurate and/or irrelevant information. The order in which the questions are asked can also have an impact on the overall coherence and comprehension of a questionnaire (DH-BIO/INF(2012)1, page 11, para 46).","In particular, the criteria for determining what data are to be obtained from insurance applicants are rather opaque, and how the information collected is translated into the actuarial language that serves as a basis for calculating the risk and the premium is unclear (DH-BIO/INF(2012)1, page 13, para 57). "]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,null,1,null,null,1,null,null,"The fact that some types of insurance are linked to an employment relationship must be taken into account because of the risk of discrimination."]
["Insurance","Netherlands","Achmea",null,1,"Insurance underwriting is diagnostic and prognostic testing in a specific screening situation with adverse selection of prevalent cases. Reliability and relevance of test are subject to measuring conditions, prevalence and disease-spectrum and cannot be validly curtailed by general rules. Applying medicine should never be censored.",1,null,"Everything that could lead to vulnerabilities, problems and burdens should be addressed. For example, health related data, invasive tests, and medical examinations in general.",1,null,"Everything that could lead to vulnerabilities, problems and burdens should be addressed.","The extent, form, and goal of the informed consent to be given by the applicant. General information on the underwriting process."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"Only in a general sense, because insurance underwriting is a form of diagnostic and prognostic testing in a specific screening situation with adverse selection of prevalent cases. Reliability and relevance of test are subject to measuring conditions, prevalence and disease-spectrum and cannot be validly curtailed by general rules. Applying medicine should never be censored.",1,null,"Everything that could lead to vulnerabilities, problems and burdens should be addressed. E.g. health related data, invasive tests, and medical examinations in general.",1,null,"Everything that could lead to vulnerabilities, problems and burdens should be addressed.","The extent, form, and goal of the informed consent to be given by the applicant. General information on the underwriting process."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,null,1,null,null,1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Not necessary.",null,1,"Not necessary.",null,1,"Not necessary."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"Insurers seek to use a robust evidence base when developing their underwriting criteria. This can involve seeking expert medical opinion, review of medical research and looking at past practice. Taking the reliability and relevance of predictive tests as an example, the process of developing an evidence base can involve input from physicians, medical researchers and respected medical institutions. In relation to predictive genetic tests, the ABI on behalf of its members has a formal approval process, where the Government must approve the use of a predictive genetic test. The Government convenes a panel of experts, in discussion with the ABI, with the panel charged with analysing the evidence and advising whether the test is appropriate for use. This is a robust procedure that is challenging and requires a solid case for approval. Once the test is authorised, insurers can take the evidence base and apply it to the products they are developing. This process is commercially sensitive and therefore not open to the public. We think this is appropriate to ensure that the consumers get the best of a competitive market and recognises that insurers are best placed to determine what is right for their business.",null,null,"There is already law (e.g. the Access to Medical Records Act and the Data Protection Act) that governs the information that can be requested by insurers. Insurers must follow this law, and it would not be appropriate to consult on whether and how insurers will abide by legal requirements. It is likely that stakeholders would have already input on the legislation, and it would have gone through Parliamentary processes. The industry can also adopt codes of practice, which can clarify or add to legal requirements. In certain circumstances, it might be appropriate to consult widely on these.",null,null,"While it is often useful to have stakeholder views on how questionnaires are interpreted - to ensure that they are eliciting the necessary information and consumer views are taken into account - the data that questionnaires provide is necessary to a legal contract. It is essential that questionnaires provide the information needed for legal certainty and to form a valid contract. As such, questionnaires must be worded carefully according to legal and regulatory standards, and are therefore potentially inappropriate for a consultation process. As above, where there is legal or regulatory reform in this area, there is likely to be options for stakeholder consultation."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"See our response to question 30.d.",null,null,"See our response to question 30.d.",null,null,"See our response to question 30.d.","There are hundreds of different insurance products, offered by thousands of different insurance companies which run in a tight competition in very different markets with different needs. Furthermore the medical landscape and the insurance world is rapidly changing which does not allow to nail down the underwriting process as a metric science! This does not mean that general principles such as understandability of the questionnaire or treating the client fairly are out of such scope."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"The specialist expertise required to make such judgments could not be covered by a general meeting of interested parties, and in any event insurers only use tests where the reliability and relevance has been confirmed in clinical medicine.",null,1,"This is already covered by data protection laws. Also as already stated elsewhere, there remains a real need to support different business models which require different levels of medical questioning and medical examination at very different levels.",null,1,"All insurers are already motivated to ensure their questionnaires are as short as their pricing will allow and are understandable and objective. Consultation can provide principles behind questionnaire wording, but it cannot regulate actual wordings, which must remain variable to match the different requirements of each product, market and sales environment. Past experience shows efforts to regulate the wording of forms restricts innovation and fails to recognise the different requirements of each product and process. Wording can also be influenced by claims cases, and especially national level court rulings, which need to be fed back into the health questions of the application form.","The focus of such consultation will change over time to reflect current hot topics, but as a minimum should serve to ensure a better understanding of insurance/underwriting and to ensure the industry remains up to date with consumer concerns."]
["Medical professionals","France","Académie nationale de médecine (France)",null,1,"It was said that insurers should not be allowed to use the results of predictive tests.",1,null,"Consultation is particularly useful for the types of medical examinations asked for by insurers.",1,null,"Useful to prepare clear, precise questionnaires that are easy to understand and do not include any questions outside the bounds of what is necessary from a medical viewpoint and acceptable from an ethical viewpoint. The questions are directly related to the risks to be covered."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1,null,null,1,null,null,1]
["Medical professionals","Luxembourg","Collège Médical",1,null,null,1,null,null,1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"The appropriate interpretation of predictive tests requires regular input from experts in the field, specifically, clinical geneticists and genetic counsellors.",1,null,"The interpretation of data requires regular input from experts in the field.",1,null,"The wording needs to be non-coercive, clear, non-ambiguous, and not encouraging breaches of privacy (whether inadvertent or not) for the insured or other family members."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,null,1,null,null,1,null,null,"Permanent and prompt exchange of information."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1,null,null,1,null,null,1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,null,1,null,null,1]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,null,1,null,null,1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"There would be no basis for the use of predictive tests otherwise.",1,null,"Accuracy, relevance and consent for disclosure should all be addressed.",1,null,"Ambiguity must be avoided."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,null,1,null,null,1,null,null,"To which degree family information should be asked for - if at all."]
["Universities","Hungary","Central European University, Budapest",1,null,null,1,null,null,1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"It is important that insurers are educated as to scientific developments and advances in genetic technology. The majority of genetic tests have limited predictive value, and it is important that insurers are aware of the realities of genetic test results. Reliability and relevance are key considerations in the underwriting process. Although increased reliability and relevance promote the use of predictive tests, we must address the issue of whether use of predictive tests and this information is appropriate by insurance companies, particularly in consideration of the potential for abuse and misuse of predictive tests (particularly predictive genetic tests). We must also have regard to the social purpose of insurance and the desire for all individuals to have unfettered access to insurance.",1,null,"There should be discussion and education around the correct collection and legitimate use of health related data and medical examinations. In particular, the issue of segregating genetic and non-genetic information is becoming increasingly important as science advances and genetic information is being increasingly included in medical records. There may be a vast amount of health related information (including genetic information) in an individual's medical records that may not be relevant for underwriting purposes, but if used, may adversely affect the insurance applicant's insurance coverage or premium, leading to a wide range of abuses.",1,null,"Questionnaires should be clearly worded, avoiding any ambiguity and/or confusion on the part of insurance applicants. Questions asked should be in accordance with principles of relevance and proportionality. Vague questions may result in additional, irrelevant information being disclosed that may negatively impact upon access to health insurance.","The consultation process should provide for updates and education in relation to legal developments (for example, legislative developments, case law) relevant to the insurance industry, in particular, legal advances in the area of data protection and privacy."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1,null,null,1,null,null,1,null,null,"Treatment consequences - e.g. financing of specific treatment by insurers."]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1,null,null,1,null,null,1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,null,1,null,null,1,null,null,"The level of premiums and related commercial issues."]
["Consultative bodies","Spain","Spanish Bioethics Committee",null,1,null,null,1,null,null,1,"In all three cases for the same reason as in our response to question 29. Furthermore, it would be a laborious process."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,null,1,null,null,1]

{"sheet":"Q31","index":34,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","31. Would it be appropriate to set up a permanent body within which the various stakeholders and expertises would be represented, to facilitate this consultation process?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1]
["Patients","Europe","Autism-Europe",1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"A body will be consulted and may be useful provided that each party is dealt with on an equal footing with due regard for its separate objectives."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,"Patients’ representatives should be involved."]
["Consumers","France","Confédération syndicale des familles (CSF)",1]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"It is appropriate to set up a new permanent body in order to facilitate the consultation process. In addition, consumer rights are to be publicised by well-organized campaigns, and consumer organizations must have the right to participate fully in any legislative process concerning genetic data."]
["Unions","Europe","Confédération Européenne des Syndicats",1]
["Insurance","Netherlands","Achmea",1]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1]
["Insurance","Netherlands","Nationale Nederlanden/ING",1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Not necessary."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"It would be unnecessary and overly bureaucratic to set up a permanent body for this purpose. A body might hinder the process and act as a barrier to effective communication."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"How should such a body work, if there are hundreds of different insurance products, offered by thousands of different insurance companies which run in a tight competition in very different markets with different needs? Just to use the same expert language between the different stakeholders requires huge effort and a long time. For example: clinical medicine and insurance medicine are quite different. To explain the calculation methods to physicians requires much time."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"There are already many national and European consultative bodies covering insurance practice."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"Very useful."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,"A permanent body with established terms of reference and appropriate representation would provide a clear source for consultation, questioning or dispute."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"A body was set up in the UK, the Genetics and Insurance Committee (GAIC) a non-statutory advisory non-departmental public body with a UK-wide remit. This committee was wound up on 1 July 2009 following the introduction of the Concordat and Moratorium relating to Genetics and Insurance in 2001. The Moratorium and Concordat has been reviewed and extended a number of times since it was launched in 2005, with the latest review due to expire in 2017.\nThis document was informed by discussions between the Association of British Insurers, its member companies, the Government, the Genetics and Insurance Committee (GAIC) the Human Genetics Commission (HGC), patient groups and other interested parties. This Moratorium severely limits the use of predictive genetic tests for insurance purposes within the UK to a single condition - for certain categories of insurance above specified financial limits. In practice, GAIC has only approved a single application to use predictive genetic test information relating to Huntington's Disease for applications for life insurance above £500,000. Applications for life insurance at this level constituted some 3% of the UK market in 2011."]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"This would ensure appropriate use and regulation of medical information."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"This body should be international, e.g. one on the European level."]
["Universities","Hungary","Central European University, Budapest",null,1,"I am not sure."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"A permanent body dedicated to facilitating this consultation process would oversee the coordination of the various stakeholders and ensure that the relevant topics are open to discussion. In particular, any proposals in this regard should have consideration of Article 33 of the CRPD and the requirement of an independent monitoring mechanism to promote, protect and monitor the implementation of the CRPD."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"The monitoring public authority (see above) would be the appropriate body to organize the consultation process.  "]
["Consultative bodies","Spain","Spanish Bioethics Committee",null,1,"For the same reason as we mentioned in our response to question 29: this would not increase the transparency."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1]

{"sheet":"Q32","index":35,"n_rows":39,"n_cols":10,"rows_kept":39,"cut":false,"hidden":false,"merged":[[35,3,35,9],[0,0,2,0],[0,1,2,1],[0,2,2,2],[17,3,17,9],[32,3,32,9],[0,3,0,9],[1,4,1,6],[1,7,1,9],[14,3,14,9]]}
["Activity sector","Country","Organisation","32. If so, what should be:\n"]
[null,null,null,"a. the composition of such body?","b. its tasks:\ni. specific tasks ?",null,null,"ii. a more general work scope?"]
[null,null,null,"Comments","YES","NO","Comments (if any)","YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ","An NGO with an elected board.",1,null,"To organise and carry out a transparent consultation process; to ensure that the consultation process is fair and that the results are publicised. ",null,null,"To provide a platform for an on-going exchange of ideas and a source of information to the general public (e.g. including details of the principles of insurance, how decisions are made, etc.)."]
["Patients","Europe","Autism-Europe","Representatives of governments, civil society, consumers, experts in bio-ethical issues.",null,1,null,1,null,"Protecting the insurance applicant."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS","In any case, sufficient representation of patients’ associations or, more broadly, consumers.",null,null,"The main aim is to bring about an effective improvement in the position of patients as soon as possible, preferably for all types of insurance."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé","Insurers + medical experts from academic societies + associations.",1,null,"Ethical issues, mediation, studies and research."]
["Consumers","France","Confédération syndicale des familles (CSF)","It should be made up of:                                     - representatives of insurers;                                  - representatives of the state (acting as representatives of the health sector  if they are involved in this sector) (albeit with less powers);                            \n- representatives of consumers;                        - representatives of patients’ associations; \n- representatives of the medical and scientific communities.",1,null,null,1,null,"This committee should be able to deal, on its own initiative or at the request of a stakeholder, with any matter relating to insurance or medical data."]
["Consumers","France","Union nationale des associations familiales (UNAF)","Users’ representatives (families, consumers, patients).",1,null,"Ethical questions, professional standards, legal issues, evaluation, studies and research, mediation.",null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]","By setting up this new public body it has to be assured that not only physicians, scientists, supervisory authorities or insurers will be its permanent members. Especially non-governmental organisations like those for patients, consumers and the insured will have to be fully represented in that body. ",1,null,"Concerning the insured, their specific issues have to be examined under the perspective of transparency: collection, access and storage of data, fair underwriting process, accurate actuarial basis of tariff calculation and comprehensive coverage description.",1,null,"Each of these NGOs will be able to point out its specific views and evaluations on this very complex subject, which is too important to be left only to the experts."]
["Unions","Europe","Confédération Européenne des Syndicats"]
["Insurance","Netherlands","Achmea","Insurance companies, independent insurance doctors, and associations of patients. If needed: government representatives.",1,null,"See our response to question 30.",null,1]
["Insurance","Netherlands","IC Leven (Independent Committee Life)","Insurance companies, independent insurance doctors, and associations of patients. If needed: government representatives.",1,null,"See our response to question 30.",null,1]
["Insurance","Netherlands","Nationale Nederlanden/ING",null,null,null,null,1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc."]
["Insurance","United Kingdom","Association of British Insurers - ABI","Not applicable."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,null,"See our response to question 30. Also research of epidemiological data."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited","Not necessary.",null,1,null,null,1]
["Medical professionals","France","Académie nationale de médecine (France)","Insurers, insured people, medical associations, government representatives.",1,null,"The list of powers and responsibilities should be clearly set out (and include, for example, validating questionnaires, opinions on any controversial general stances taken by insurance companies).",null,1]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)","Professional associations or their equivalent representing doctors, lawyers, insurers and insured people.",null,1,null,1]
["Medical professionals","Luxembourg","Collège Médical","A representative of each profession that has to be involved in the negotiation of insurance contracts.",1,null,null,1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors","Ideally such a body would have representation from the areas of health policy, actuarial advisors, health economists, rotating medical consultants with specific subject matter expertise (e.g. for issues surrounding interpretation of genetic test result information, this would include clinical geneticists and genetic counsellors),  bureaucratic/governmental representation, consumers, advocates, legal and ethics experts. The activities of such a body should be funded by the insurance industry as a whole.",1,null,"This body would need specific terms of reference with the capability of striking task forces as needed to look more closely at issues or to broaden scope if necessary.\nThe mandate should include ensuring appropriate use of advances in medical knowledge and technological expertise to provide for appropriate and accurate incorporation of information from new technologies, and the increasing complexity and availability of complex information into insurance underwriting.",1,null,"Possibly, relating to professional or public education initiatives, or other considerations. The decision to add activities of a broader nature should be within the purview of the body, as defined within the terms of reference. Activities which may be construed as outside of the original mandate may be achieved through the creation of task forces or working groups as needed."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]","Experts, insurers, applicants, ethic experts, self-help groups/patient organisations.",1,null,"Verification in the practice, evaluation of the outcomes/statistics.",1,null,"Insurers have to be accountable to this body (see our response to question 32.a)"]
["Geneticists","Latvia","Latvian Society of Medical Genetics","Lawyers, bioethics experts, medical doctors, representatives from insurance companies and society.",null,null,null,1]
["Geneticists","United Kingdom","PHG Foundation ","All relevant stakeholders. GAIC was comprised of a multidisciplinary group including representatives from insurance, clinicians and other stakeholders.",1,null,null,null,1,"In the UK, more general oversight of the context for predictive genetic tests for other uses such as forensics has been within the remit of the Human Genetics Commission. This statutory authority is about to be replaced with a body which has a wider remit. It remains to be seen whether it will be able to offer as authoritative an opinion to policy makers as previous bodies have done. "]
["Geneticists","France","Fédération Française de Génétique Humaine","Insurers, doctors, geneticists, state representatives and consumers.",1,null,"Opinions on the relevance of insurance companies’ health questionnaires and their development.",1,null,"Ethical considerations."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n","Multidisciplinary.",1,null,"Setting parameters for commonly encountered conditions.",1,null,"Taking a longer term view with reference to changes in knowledge of technology and therapeutic interventions."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)","Maybe somewhat similar to EPPOSI.",1,null,"Risk assessment issues, uniform policy between countries, standardisation.",1]
["Universities","Hungary","Central European University, Budapest"]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland","Insurance company representatives, consumer group representatives, government representatives, actuaries, legal and human rights experts, physicians/ scientists/ geneticists.  Importantly, such a body should also include persons with disabilities and their representative organisations, in accordance with the overall objective of the CRPD to promote inclusion and active involvement of persons with disabilities, and specifically in accordance with Article 4.3 of the CRPD.  ",1,null,"Specific tasks might include: review of underwriting practices in different jurisdictions, review of data collection processes, review of relevant law and latest developments applicable to the insurance industry, guidance in relation to advancing science/ genetic technology/ predictive medicine.",null,1,"For clarity and to ensure a structured consultation with the necessary stakeholders, it would be preferable to assign specific tasks to this body."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]","As described in our response to question 29.",null,null,null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health","Insurers, consumers, governmental representatives, actuaries.",1,null,null,1,null,"Privacy issues, information gathering on health risks and health gains."]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission","Medical, genetic and commercial experts.",null,1,null,1,null,"The consultation process could be seen as part of the general monitoring scope of this body."]
["Consultative bodies","Spain","Spanish Bioethics Committee",null,null,1,null,null,1]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL","A group of professionals including a representative from the insurance companies, a representative of an ethics committee and a representative of the health sector.",1,null,null,1]

{"sheet":"Q33","index":36,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","33. Does the social nature of a risk (for example that of illness) justify an intervention by the\npublic authorities to ensure proper coverage?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1]
["Patients","Europe","Autism-Europe",1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"The DH-BIO Consultation Document places the emphasis on the different approaches of private insurance and forms of protection based on the principle of social solidarity. The system in force might provide inspiration for substantial improvements in the private insurance system."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,"For questions relating to social aspects and the involvement of the state, it is difficult for us to give detailed answers to the following questions because, while we are in favour of the intervention of the public authorities in France, we are not in a position to adopt a stance on this issue in other Council of Europe member states."]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"The private insurance policies offered to the general public are usually in the form of an adhesion contract, which sets out the general conditions that apply. An individual has virtually no alternative other than to accept or refuse the contract. The margin for negotiation is therefore extremely small, if not non-existent (DH-BIO/INF(2012)1, page 7, para 22)."]
["Unions","Europe","Confédération Européenne des Syndicats"]
["Insurance","Netherlands","Achmea",null,1,"Everybody should have at least basic access to health care cover. But for the rest, not in general."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"Everybody should have at least basic access to health care cover. But for the rest, not in general."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"Only for illness; the rest of non-insurable risks not for private coverage; then the society has to ensure those risks itself."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Public authorities are welcome to support the private insurance industry in their public communications. Proper coverage is the decision of the applicant, and public authorities should not interfere with that decision."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"Consumers make decisions about whether to seek insurance cover based on their national circumstances. For instance, whether or not insurance is compulsory is an important consideration, as is what is provided by the State. For this reason, proposals that seek to change how insurance is provided (such as whether or not a particular risk factor should be used), can diminish consumer choice. The high importance of the risk framework (including the ability to use relevant and necessary genetic data, family history, and non-genetic predictive data) is such that limitations could have significant detrimental consequences for whether cover can be provided and at what cost. This is why we consider that these decisions would better be made at the national level and on a consensus basis, where national circumstances and the reality of consumer choices can be fully understood and provided for."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"Not as a general rule, except in case of health care insurance, to which everybody should have at least a minimal access. Any intervention by public authorities would infringe the freedom of contract. In contrast to compulsory public (social) insurance, private insurance is voluntary in nature. This applies both to insurance clients and to insurers. The \"game rule\" governing this relationship is the principle of information symmetry between providers and customers: insurers need to know the risks they are insuring as well as possible."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"Most societies believe intervention is appropriate to ensure a minimum level of coverage, especially for access to medical care, is provided, or the state provides these directly. We have answered yes in this context, and it is also beneficial if authorities 'intervene' in the sense of public education, tax breaks and other incentives to encourage consumers to take up insurance. This is particularly important for pensions and long term care. Insurers then typically operate in an environment where they sell voluntary private insurances which top up these fixed minimum benefits or sell additional insurances which the state does not provide. The minimum benefits, whether actually provided by the state or insurer, need no underwriting as they are obligatory for all and can be priced accordingly at population risk levels, but cover above that is down to individual choice and the private insurance market must then be allowed to operate on usual commercial principles. We have answered question 34.a. to e. and 35 and 36 in this context."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"Everything depends on what kind of society we want. It could be a very liberal society, in which each person assumes responsibility for the risk he or she takes. There are other models, however, in which the emphasis is on maximum assistance. In the health care sphere, it is reasonable to pursue the goal of equal access for all citizens. Health care should be available to everyone. Access should be as equal as possible for everyone."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",null,null,"Questions 33 through 36 are beyond the scope of reviewers."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",null,1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"In the UK, a national health service provides a good health care service which is free to all citizens at the point of use. The state also provides a modest state pension, and modest benefit entitlement in the case of invalidity. Thus the extent of support which is available through the state may influence the need for insurance for each of these risks in a particular setting. We consider these questions may be more relevant to those countries which have less state provision and rely more heavily on individual insurance to subsidise care. However, the possibility of predictive genetic tests being more widely available (including through tests marketed direct-to-consumer) has the potential to change the existing dynamic between private insurance providers and their clients through there being asymmetry of information. For tests of low predictive value, this may make little practical difference, but for more predictive tests, it could influence behaviour, particularly the purchasing of long-term care insurance - and thus impact upon private and state insurance provision."]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"Anti-discrimination law must be adhered to."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"There should be a minimum standard insurance for everyone, regardless of income, social background, medical history, etc."]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"The social purpose of insurance provides that insurance is an important and necessary social good for all individuals. In particular, it is recognized that health care is such an important social good that access to it should be guaranteed to everyone. The importance of recognizing insurance as a key social good therefore adds merit to the hypothesis that the area of insurance ought be regulated to prevent misuse of genetic information and to ensure that individuals are not pushed out of insurance pools through being denied insurance or being charged inordinately high premiums. In this context, it is also necessary to have regard to the need to uphold the integrity of and ensure the inclusion of persons with disabilities in society, in accordance with the CRPD. In this regard, it is also important to have regard to the European Code of Social Security and the European Social Charter which provide for the right to social security, and specifies a number of risks that should be covered for all individuals."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"The intervention of public authorities will ensure risk assessment is done correctly to provide a proper coverage. Moreover, is intervention may correct excesses in this regard."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"Intervention by the public authorities is necessary to ensure that social risks such as health risks are properly covered."]

{"sheet":"Q34","index":37,"n_rows":40,"n_cols":19,"rows_kept":40,"cut":false,"hidden":false,"merged":[[31,14,32,14],[31,15,32,15],[31,16,32,16],[31,17,32,17],[31,18,32,18],[0,0,2,0],[0,1,2,1],[0,2,2,2],[17,3,17,18],[14,3,14,18],[0,3,0,18],[1,3,1,5],[1,6,1,8],[1,9,1,11],[1,12,1,14],[1,15,1,17],[31,1,32,1],[31,0,32,0],[36,3,36,18],[31,11,32,11],[31,2,32,2],[31,3,32,3],[31,4,32,4],[31,5,32,5],[31,6,32,6],[31,7,32,7],[31,8,32,8],[31,9,32,9],[31,10,32,10],[31,12,32,12],[33,3,33,18],[31,13,32,13]]}
["Activity sector","Country","Organisation","34. Which are the risks for which proper coverage should be ensured for all persons concerned:\n"]
[null,null,null,"a. illness?",null,null,"b. invalidity?",null,null,"c. death?",null,null,"d. long-term care/dependence?",null,null,"e. retirement?",null,null,"f. any other?"]
[null,null,null,"YES","NO","Comments (if any)","YES","NO","Comments (if any)","YES","NO","Comments (if any)","YES","NO","Comments (if any)","YES","NO","Comments (if any)","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,null,1,null,null,1,null,"Basic amount to cover funeral expenses.",1,null,"Essential in view of the ageing population.",1,null,"Basic coverage.","Basic travel insurance at least for short periods of time covering medical treatment and repatriation should be available to people even if they have a genetic susceptibility to a particular condition in order to ensure mobility and social inclusion."]
["Patients","Europe","Autism-Europe",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,null,1,null,"Particularly for anyone who does not have adequate cover as things stand.",1,null,null,1,null,null,1,null,null,"Payment protection insurance. Legislation has been adopted which is more advantageous to customers but it has not yet been implemented (see section 138 ter of the Act on the terrestrial insurance contract)."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,null,1,null,null,null,1,null,1,null,null,1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,null,1,null,null,null,null,null,1]
["Consumers","France","Union nationale des associations familiales (UNAF)",null,1,null,null,1,null,1,null,null,null,1,null,null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,null,1,null,null,1,null,null,1,null,null,1,null,null,"Unemployment (only by social welfare)."]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,null,1]
["Insurance","Netherlands","Achmea",1,null,"Basic health care cover.",null,1,"Social security should provide for this.",null,1,"Social security should provide for a minimal pension. For the rest: death cover is not really needed, but only a commodity.",null,1,"Social security should provide for this.",null,1,"Social security should provide for a minimal pension."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"Basic health care cover.",null,1,"Social security should provide for this.",null,1,"Social security should provide for a minimal pension. For the rest: death cover is not really needed, but only a commodity.",null,1,"Social security should provide for this.",null,1,"Social security should provide for a minimal pension."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,null,null,1,null,null,1,null,null,1,null,null,1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Private commercial decisions should be done privately, and should not be subjected to interference by an outside agency.",null,1,"Private commercial decisions should be done privately, and should not be subjected to interference by an outside agency.",null,1,"Private commercial decisions should be done privately, and should not be subjected to interference by an outside agency.",null,1,"Private commercial decisions should be done privately, and should not be subjected to interference by an outside agency.",null,1,"Private commercial decisions should be done privately, and should not be subjected to interference by an outside agency."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"We want to make the general point that how consumers choose to meet their needs depends largely on the options available to them nationally (options can include the national health system and welfare benefits, employer conditions and insurance). Insurance sits within this framework and is tailored to consumer needs. National health and welfare systems significantly effect whether a consumer chooses voluntary insurance. For that reason, we reiterate the point that decisions should be made at Member State level. Further, consumers can take cover from a range of different products to meet a general social risk. For instance, there are many products that provide support to consumers who are suffering an illness, including: private medical insurance, critical illness cover and income protection."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"Split views.  Yes for basic health care insurance cover.\n",null,null,"A minimal pension scheme should be provided for by social security.",null,null,"A minimal pension scheme should be provided for by social security.",null,null,"A minimal pension scheme should be provided for by social security.",null,null,"A minimal pension scheme should be provided for by social security."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Any insurance with voluntary elements such as timing of purchase, whether to purchase and how much to purchase needs an element of underwriting to avoid the obviously anti-selective purchasing which would otherwise take place. Where a state can oblige purchase of a fixed coverage, it is however possible to price at population risk levels and remove underwriting. Where state or society chooses not to make such insurances obligatory, selection must remain.",null,1,"Any insurance with voluntary elements such as timing of purchase, whether to purchase and how much to purchase needs an element of underwriting to avoid the obviously anti-selective purchasing which would otherwise take place. Where a state can oblige purchase of a fixed coverage, it is however possible to price at population risk levels and remove underwriting. Where state or society chooses not to make such insurances obligatory, selection must remain.",null,1,"Any insurance with voluntary elements such as timing of purchase, whether to purchase and how much to purchase needs an element of underwriting to avoid the obviously anti-selective purchasing which would otherwise take place. Where a state can oblige purchase of a fixed coverage, it is however possible to price at population risk levels and remove underwriting. Where state or society chooses not to make such insurances obligatory, selection must remain.",null,1,"Any insurance with voluntary elements such as timing of purchase, whether to purchase and how much to purchase needs an element of underwriting to avoid the obviously anti-selective purchasing which would otherwise take place. Where a state can oblige purchase of a fixed coverage, it is however possible to price at population risk levels and remove underwriting. Where state or society chooses not to make such insurances obligatory, selection must remain.",null,1,"For pension savings there is not usually any selection, so anyone can save for their pension irrespective of their state of health. However annuities and impaired annuities are beginning to gain momentum in some markets, e.g. the UK, and the ability to risk select for these is important.  "]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"In this area, the aim is to offer equal access to health care for all; the best possible access for all, without discrimination based on financial means.",1,null,"Disability support is essential.",null,1,"Optional insurance should be possible.",null,1,"Optional insurance should be possible.",null,1,"Contributions linked to the person’s work situation."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Medical professionals","Luxembourg","Collège Médical",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors"]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,null,null,null,null,null,null,null,null,null,null,null,null,null,"Compulsory? Voluntarily? "]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,null,1,null,null,null,1,"On the basis that the exclusion of this risk is legal in many countries.",null,1,"This has conventionally been excluded from state provision. However, limited evidence from the Reveal study (Zick et al (2005) Genetic Testing for Alzheimer's Disease and its Impact on Insurance Purchasing Behaviour, Health Aff) suggests that predictive testing for Alzheimer's disease may influence the purchasing of long-term care insurance raising concerns about adverse selection. This may need to be addressed explicitly in the future as the population ages and the use of predictive testing grows.",1]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"To protect an individual's statutory rights.",1,null,"See our response to 34.a. ",1,null,"See our response to 34.a. ",1,null,"See our response to 34.a. ",1,null,"See our response to 34.a. "]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,null,1,null,null,1,null,null,1,null,null,1,null,null,"Very basic travel insurance for non-risk holidays."]
["Universities","Hungary","Central European University, Budapest",1,null,null,1,null,null,1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"It is widely recognized that health care is such an important social good that access to it should be accessible to everyone.  In accordance with the social purpose of insurance, there should not be any prohibitive obstacles to obtaining health care.  ",1,null,"In the event of invalidity, an individual may temporarily or partially lose the ability to work and participate actively in the community.  This may result in poverty, exclusion and isolation, together with a wide range of social implications (particularly for persons with disabilities, and elderly persons).",1,null,"On death, life insurance can provide peace of mind and security for individuals and their dependents. The benefits from life insurance are intended to tide survivors over until they can become financially self-sufficient. In this respect, it has been observed that life insurance is perceived as serving a need rather than being a mere commodity, and therefore ought to be universally available, without barriers. In addition, in countries in which there is a requirement to purchase life insurance as a prerequisite to obtaining a mortgage, life insurance is further viewed as essential in securing fundamental human rights and ensuring an individual has access to owning property. Insurance coverage may therefore be seen as important for one’s full membership in society (as property ownership is generally accepted as an important social good that many individuals strive to obtain).",1,null,"The same principles of universal access to health care can be applied to long-term care/dependence insurance. For those who need the benefits which long-term care/dependence insurance affords, their participation in society relies to a certain degree on having unfettered access to this insurance product.  ",1,null,"On retirement an individual may suffer a loss of income. This may have subsequent implications on an individual's inclusion in the community in making a fruitful contribution to society. It is important that all individuals have the security of financial provision on retirement from employment."]
[]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,null,1,null,null,null,1,null,1,null,null,1,null,"So far, public authorities provide a coverage with a variable percentage in some cases."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,null,1,null,null,1,null,null,1,null,null,1,null,null,"Unemployment."]

{"sheet":"Q35","index":38,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","35. In order to ensure proper coverage, should it be possible for the public authorities’\nintervention to take the form of regulation of private insurance?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1]
["Patients","Europe","Autism-Europe",1,null,"The UN Convention on the Rights of Persons with Disabilities, Article 25.e) prohibits discrimination against persons with disabilities in the provision of health insurance, and life insurance where such insurance is permitted by national law, which shall be provided in a fair and reasonable manner. In order to fulfil this obligation, the States should regulate policies of private insurance. "]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"As the parliament considered it necessary to do so for payment protection insurance."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)"]
["Consumers","France","Union nationale des associations familiales (UNAF)"]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"As in the case of other types of adhesion contracts, national legislation usually imposes some limits on the contractual freedom of the party offering the contract (i.e. insurer) with a view to ensuring a balance in the relationship between the parties and, where appropriate, protecting the insurance applicant (DH-BIO/INF(2012)1, page 7, para 22)."]
["Unions","Europe","Confédération Européenne des Syndicats"]
["Insurance","Netherlands","Achmea",null,null,"This question is irrelevant, as public authorities always have the possibility to intervene."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,null,"This question is irrelevant, as public authorities always have the possibility to intervene."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,"But not making the market principles impossible."]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Private commercial decisions should be done privately, and should not be subjected to interference by an outside agency."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"We start with the principle that intervention, including through regulation, should seek to remedy harm or promote benefit. Further, it should be proportionate and appropriate to the situation. We have found it difficult to answer this question because there is an assumption that the only way to ensure proper coverage is through regulation of private insurance. Insurance is a solution for many people, however it is also a solution that must work in context. Insurance solutions can take many forms, including complementing, duplicating or topping up cover provided by the social security and healthcare systems of Member States.\nWe think that the best evidence base would be to understand what is already available to the consumer in each of the risk areas identified, and how best to fill gaps. We are interested in how insurance could be of greater benefit to consumers and what mechanisms are best to achieve this, within each Member State. We also note that Member States have regulatory systems, and therefore the questions is not whether it is possible to regulate. Rather the question is if more regulation is needed, and we strongly believe that it is not, since both European and Member State regulation is in place to provide protection to consumers in a number of areas, including financial services."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"Don't understand the question."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"To make an insurance obligatory would be an expensive political step, and one which most governments would not consider (beyond state benefits such as pensions or basic health care) as it would be seen by the public as another form of tax. In any event, private insurance is already subject to national regulation in many forms."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"The main rules should be based on the relevant legislation (e.g. no account should be taken of genetic predictive tests)."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",null,null,"Do not know."]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors"]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"In the UK, an independent authority - the Financial Services Ombudsman - has the power to investigate cases of non-disclosure in medical insurance and, after investigation, to require policies to be reinstated, or for claims to be paid out in whole or in part."]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,"If the principle of private insurance has been accepted in addition to, or instead of, a non-private social security or mutual-type insurance."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"To ensure that there is no discrimination."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"But in such cases it is important that the public and private sector together make a sustainable system - where resources are not drained by unwarranted legal procedures, etc. (like in the US)."]
["Universities","Hungary","Central European University, Budapest",1,null,"Only some basic elements to secure basic rights."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"To ensure the achievement of universal access to insurance, and to facilitate the coverage of the risks indicated in question 34, regulation of private insurance may be a preferable approach. Some risks are only partially covered (or in some cases, not covered at all) under social insurance, thereby creating obstacles to access to insurance."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"The current decline of public insurance systems justifies moreover this regulation."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1]

{"sheet":"Q36","index":39,"n_rows":39,"n_cols":9,"rows_kept":39,"cut":false,"hidden":false,"merged":[[35,3,35,8],[0,0,2,0],[0,1,2,1],[0,2,2,2],[17,3,17,8],[32,3,32,8],[0,3,0,8],[1,3,1,5],[1,6,1,8],[14,3,14,8]]}
["Activity sector","Country","Organisation","36. If so, which form(s) of regulation would be most appropriate:\n"]
[null,null,null,"a. binding regulation?",null,null,"b. flexible framework (e.g. agreement between stakeholders and public authorities)?"]
[null,null,null,"YES","NO","Comments (if any)","YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,null,null,1]
["Patients","Europe","Autism-Europe",1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"If optional arrangements are made, the situation will not improve very quickly.",null,null,"Experience in Belgium does not offer any reason for enthusiasm."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,null,null,1]
["Consumers","France","Union nationale des associations familiales (UNAF)",1,null,null,null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",null,1,null,1,null,"The development of the German private illness insurance shows clearly several serious problems: permanent increase of premiums, severe misrepresentations by underwriters, juridical conflicts on insurance coverage, etc. Therefore the BdV advocates a transparent framework fixed by law (like in Germany by the VVG-Versicherungsvertragsgesetz), which will regulate the fundamental conditions for the private illness insurance. Indispensable are the following requirements: sustainably affordable premiums, access for the vast majority of the population, comprehensible and transparent calculation of all tariffs."]
["Unions","Europe","Confédération Européenne des Syndicats"]
["Insurance","Netherlands","Achmea",null,1,"Binding regulation can lead to unprofitable insurances: insurers will stop unprofitable products, which could lead to attrition of the insurability instead of enhancing it.",1]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"Binding regulation can lead to unprofitable insurances: insurers will stop unprofitable products, which could lead to attrition of the insurability instead of enhancing it.",1]
["Insurance","Netherlands","Nationale Nederlanden/ING",null,1,"Only in case of illness insurance for basic coverage.",1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",1,null,"Private commercial decisions should be done privately, and should not be subjected to interference by an outside agency",1,null,"Private commercial decisions should be done privately, and should not be subjected to interference by an outside agency"]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"Should interventions be required, codified interventions (such as regulations) should be avoided. This is because the science of genetics is constantly evolving and therefore requires a flexible framework. Codified interventions risk being out-of-date even before implementation.",null,null,"Where intervention in the form of regulation is necessary after a full examination of the situation, a flexible framework is preferable. As we stated in our responses to previous questions, the framework must keep up with developments in science and application to insurance.\nIn the UK, we have a Concordat and Moratorium. This is a flexible framework reviewed every three years by the insurance industry and the UK Government to take account of changes. The review process invites stakeholder input, and uses an evidence base built on consumer experience."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"If the binding regulation is unwelcome to insurance companies, it will influence their market behaviour encouraging adverse selection.",null,1,"How should such a flexible framework work, if there are hundreds of different insurance products, offered by thousands of different insurance companies which run in tight competition in very different markets with different needs?  Just to use the same expert language between the different stakeholders requires huge effort and a long time."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,null,null,1]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"Only for binding principles. There should be penalties for infringements of the rules.",1,null,"For the remainder there should be supervision stemming from the negotiation between the parties, in the presence of the authorities."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",null,null,"Do not know.",null,null,"Do not know."]
["Medical professionals","Luxembourg","Collège Médical",1,null,null,null,1,"At the least a binding agreement between the stakeholders and the representatives of the profession concerned????"]
["Geneticists","Canada","Canadian Association of Genetic Counsellors"]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,"As a result of question 36.b.",null,null,"See our answer to 36.a."]
["Geneticists","Latvia","Latvian Society of Medical Genetics",null,null,null,1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"For some types of risk including a proportion of the costs of covering health care.",1,null,"For others, such as long-term care/dependence."]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,null,null,1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities",1,null,"There is no guarantee that self-regulation of the industry will be appropriately established.",null,1,"This could be ineffective."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",null,1,null,1]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"Binding regulation would have the advantage of certainty and uniformity. Such regulation would also have strong enforcement mechanisms.  ",null,1,"It may be more difficult to enforce a more flexible framework. In addition, the strength of such an approach may not be enough to deter prohibited actions by insurance companies."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",null,null,null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"A basic binding regulation (regarding, for example, the nature of data to be collected and processed, or the nature of predictive tests to be asked) is necessary.",1,null,"Agreements could be the best option for regulating more specific issues."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,null,1]

{"sheet":"Q37","index":40,"n_rows":38,"n_cols":6,"rows_kept":38,"cut":false,"hidden":false,"merged":[[34,3,34,5],[31,3,31,5],[0,0,1,0],[0,1,1,1],[0,2,1,2],[0,3,0,5],[16,3,16,5],[13,3,13,5]]}
["Activity sector","Country","Organisation","37.  Substantively, should this regulation take the form of a prohibition forbidding insurance companies, when evaluating the risks, to take account of genetic characteristics resulting from a predictive genetic test which is supposed to represent an increased risk?"]
[null,null,null,"YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1]
["Patients","Europe","Autism-Europe",1,null,"The prohibition stated in Article 25.e) of the UN CRPD to discriminate against persons with disabilities should be applied to people with genetic characteristics which are supposed to represent an higher risk."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"Prohibited in Belgium."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1]
["Consumers","France","Confédération syndicale des familles (CSF)",1]
["Consumers","France","Union nationale des associations familiales (UNAF)",1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"The results of predictive tests are subject to erroneous interpretations. This situation will likely even be more common in the case of complex (e.g. multi-factorial) or novel (e.g. research) tests. Currently the genetic factors linked to multifactorial diseases do not generally contribute to a significant change in disease risk. The scientific and clinical validity of genetic tests for such diseases are still not well established, and are very likely to be quite limited (DH-BIO/INF(2012)1, page 23, para 118)."]
["Unions","Europe","Confédération Européenne des Syndicats",1]
["Insurance","Netherlands","Achmea",null,1,"A complete prohibition will give a subgroup of high risk applicants an enormous financial advantage (by way of adverse selection) over other applicants and thus lead to discrimination itself. Prohibition should be subject to certain conditions to minimize adverse selection, e.g. up to certain sums insured or only for insurances without adverse selection."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"A complete prohibition will give a subgroup of high risk applicants an enormous financial advantage (by way of adverse selection) over other applicants and thus lead to discrimination itself. Prohibition should be subject to certain conditions to minimize adverse selection, e.g. up to certain sums insured or only for insurances without adverse selection."]
["Insurance","Netherlands","Nationale Nederlanden/ING",null,1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"I disagree with the prohibition of the use of predictive genetic tests for insurance purposes. Any interference in the determination of risk by an insurer degrades the integrity of the insurance contract. Applicants who are not forthcoming with any knowledge about their risk impair the contractual agreement between themselves and their insurers. Undue interference with this contractual agreement by outside agencies hurts the insurance industry and its future viability to serve the public."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"There are situations where prohibitions may be required to protect consumers against real detriment. The nature of insurance means that, in the absence of compulsion, a comprehensive risk framework is used to provide for the interests of all customers. This risk framework seeks to use all relevant information that affect the risks to be covered (or not) by the insurance. Where the risk framework is limited (for instance, by prohibitions on risk factors), this can affect coverage and the costs involved in providing cover. The consequences could be exclusion from cover (financial or otherwise). In the UK, the Moratorium restricts the use of predictive genetic test results for life, critical illness and income protection insurance under certain financial limits. Further only genetic tests approved by Government can be applied. This approach means that people who have adverse predictive genetic test results can obtain significant levels of cover, whilst protecting the customers of insurers from the consequences of extremely high claims, which have not been priced for. This risk framework works in practice because the number of policies affected by non-disclosure of predictive genetic test results appears to be low. As noted in our response to previous questions, this risk framework is kept under review to ensure that it continues to meet the needs of consumers and the insurance industry."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"Genetic characteristics are relevant for almost every disease. So it is simply impossible to ignore these features. A regulation concerning predictive genetic tests is already in force in most of the European countries. This has to be challenged as soon as there are predictive genetic tests on the market, which have an acknowledged clinical validity in order to prevent adverse selection which would result in higher premiums for all insurance applicants, if these aspects are prohibited to be part of the risk assessment process."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"It should be noted that it is common insurance practice that insurers do NOT request applicants to undergo predictive genetic testing. For predictive genetic data each state has already produced some form of limitation which reflects the characteristics of that market. Legal prohibition is more difficult as the nature and availability of genetic tests is constantly changing, requiring frequent amendments to such laws. Using very broad genetic test definitions as proposed in Chapter 2 makes it very difficult to make a distinction between a predictive genetic test and a predictive non-genetic test. The definition of a genetic test would have to be limited to DNA based testing only to make it a workable definition."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"In order to flesh out and firmly establish the rule that genetic predictive tests must not be taken into account when making decisions on insurance."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1]
["Medical professionals","Luxembourg","Collège Médical",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",null,1,"If the \"increased\" risk group is excluded, then the decreased risk group must also. There needs to be some legislated protection against discrimination based on genetic test information (such as a minimum insurability irrespective of family history or genetic test results)."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1]
["Geneticists","United Kingdom","PHG Foundation ",null,1,"See our replies to question 7. The UK system allows for disclosure of certain predictive tests in very limited circumstances. The PHG Foundation is involved in the COGS project which is exploring the potential for personalised screening for common cancers such as breast and prostate cancers. This includes statistical modelling, as well as an assessment of the ethical, legal, social and organisational aspects that might arise. Such an approach might involve genotyping an individual before symptoms develop - with a view to offering them a tailored programme of screening, environmental interventions (such as diet and lifestyle advice) and even chemoprevention. If individuals are genotyped and found to be in a high risk group, which might justify early and frequent screening, then information about screening practices and invitations might be used as a proxy for genotypic information by insurers. Increasingly personalised approaches such as this might be used to target health care and reduce adverse events from screening and medication. This implies that a more nuanced approach to the regulation of predictive genetic information might be needed in the future - as the current model is predicated upon highly penetrant monogenic conditions. As the consultation paper acknowledges, the use of predictive risk information in relation to complex diseases such as cancer, heart disease and diabetes is much more complex than predictive genetic testing for monogenic diseases, which has been the existing industry paradigm."]
["Geneticists","France","Fédération Française de Génétique Humaine",1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"Predictive testing may not define onset or severity of disease and could deny at-risk individuals the opportunity of undergoing predictive testing for their own long-term planning or reproductive planning needs."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"See our response to the previous questions. For standard insurance, questions about predictive genetic testing and family history should be forbidden."]
["Universities","Hungary","Central European University, Budapest",1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"In light of the potential for abuse (insurance applicants may suffer unfair disadvantage, unjustified discrimination, and breaches of privacy, as a result of use of genetic information and genetic test results), it is submitted that insurance companies be forbidden from taking account of genetic characteristics. Consideration of genetic characteristics can also act as an unjustified obstacle to insurance and healthcare. This may result in the exclusion and isolation of certain vulnerable individuals from society (particularly persons with disabilities and elderly persons). This submission is in line with the EU Charter of Fundamental Rights, Article 21.1 which prohibits discrimination on the basis of, inter alia, genetic features. It is also in accordance with European Union data protection legislation, as well as the Article 8 of the European Convention on Human Rights providing for the right to respect for private and family life. In addition, the Council of Europe’s Convention on Human Rights and Biomedicine (Chapter IV, Article 11) prohibits any form of discrimination against a person on grounds of genetic heritage. In an effort to avoid discrimination in the insurance context, Article 12 of the Convention on Human Rights and Biomedicine states that “tests which are predictive of genetic diseases … may be performed only for health purposes”, which implies that an insurer is not entitled to ask for a predictive genetic test to be carried out as a precondition for concluding an insurance contract. This submission is also in line with the overall tenor of the CRPD.  Specifically, it is necessary to have regard to principles of equality, dignity, integrity and inclusion, which animate the CRPD. Importantly, in addition to the potential risk of discrimination, breaches of privacy and exclusion from society, the ultimate fear is that advances in genetic science (and its misuse by insurers and other social actors) could potentially signal the creation of a genetic underclass and the relegation of genetically undesirable individuals, if not appropriately regulated. This may lead to the practice of genetic cleansing, not just in the insurance industry, but in other facets of life such as education, employment, political life and society in general."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,"Only as a general principle. But such a prohibition is not applicable in cases of some disorders or diseases (see our response to question 7)."]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,"If the insurer was allowed to do that, the applicant could suffer discrimination."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,"This prohibition should apply to all contracts, whether compulsory or optional, and to all risks (sickness, invalidity, death, etc.)."]

{"sheet":"Q38","index":41,"n_rows":39,"n_cols":9,"rows_kept":39,"cut":false,"hidden":false,"merged":[[35,3,35,8],[0,0,2,0],[0,1,2,1],[0,2,2,2],[17,3,17,8],[32,3,32,8],[0,3,0,8],[1,3,1,5],[1,6,1,8],[14,3,14,8]]}
["Activity sector","Country","Organisation","38. Should such a prohibition be :\n"]
[null,null,null,"a. limited to insurances in respect of which the risk of adverse selection is nil or virtually nil, particularly compulsory insurances?",null,null,"²"]
[null,null,null,"YES","NO","Comments (if any)","YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",null,1,null,1,null,"Some insurances are, technically speaking, optional but not being able to take one out may have a considerable impact on people's lives (e.g. on the ability to take out a mortgage or to travel)."]
["Patients","Europe","Autism-Europe",null,null,null,1,null,"The underwriting policies of insurance schemes with optional subscription should be strictly regulated by the state."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",1,null,"This prohibition has to be applied. "]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",null,1,null,1]
["Consumers","France","Confédération syndicale des familles (CSF)",null,1,null,1]
["Consumers","France","Union nationale des associations familiales (UNAF)",1,null,null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",null,1,"No exceptions allowed.",1,null,"No exceptions allowed."]
["Unions","Europe","Confédération Européenne des Syndicats",null,1,"The prohibition should be comprehensive.",1]
["Insurance","Netherlands","Achmea",1,null,"If there is no adverse selection, there can be no misuse and no discrimination. ",null,1,"A complete prohibition will give a subgroup of high risk applicants an enormous financial advantage (by way of adverse selection) over other applicants and thus lead to discrimination itself. Prohibition should be subject to certain conditions to minimize adverse selection, e.g. up to certain sums insured."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"If there is no adverse selection, there can be no misuse and no discrimination. ",null,1,"A complete prohibition will give a subgroup of high risk applicants an enormous financial advantage (by way of adverse selection) over other applicants and thus lead to discrimination itself. Prohibition should be subject to certain conditions to minimize adverse selection, e.g. up to certain sums insured."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,null,null,1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"I disagree with the prohibition of the use of predictive genetic tests for insurance purposes. Any interference in the determination of risk by an insurer degrades the integrity of the insurance contract. Applicants who are not forthcoming with any knowledge about their risk impair the contractual agreement between themselves and their insurers. Undue interference with this contractual agreement by outside agencies hurts the insurance industry and its future viability to serve the public.",null,1,"I disagree with the prohibition of the use of predictive genetic tests for insurance purposes. Any interference in the determination of risk by an insurer degrades the integrity of the insurance contract. Applicants who are not forthcoming with any knowledge about their risk impair the contractual agreement between themselves and their insurers. Undue interference with this contractual agreement by outside agencies hurts the insurance industry and its future viability to serve the public."]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"If prohibition is necessary, then it should be applied where the risk of adverse selection is nil or virtually nil. In the UK, the Moratorium works because the number of policies affected by non-disclosure appears low, and therefore insurers are comfortable that the adverse selection risk is manageable.\nThis is an area that is monitored as part of the agreement with the Department of Health.",null,null,"This is much more difficult. Optional subscription means that the risk pool of consumers is likely lower than if there is compulsory insurance. As such, the risk of adverse selection is likely higher and the consequences of applying a prohibition greater as well. We oppose a prohibition resulting in insurers and their customers bearing risks that were not accounted for or priced."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,null,"Who would be able to monitor this swift changing genetic and insurance landscape and keep on adjusting this regulation relative to the state of the art?",null,1]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",1,null,"As indicated in our answer to question 37, such insurances can be offered with little or no underwriting.",null,1,"The bigger the optional element, the greater the cost of restricting the ability of insurers to risk selection. "]
["Medical professionals","France","Académie nationale de médecine (France)",null,1,"Should apply to all insurance.",1,null,"Loan insurance, for example."]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",null,1,null,1]
["Medical professionals","Luxembourg","Collège Médical",null,1,"There is a clear distinction between optional insurance schemes, which are subject to the evaluation of risks, and compulsory insurance deriving from people's social status (employee, unemployed, pensioners, etc.), which provide cover regardless of the risk.",1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",1,null,null,null,1]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,null,1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",null,null,null,1]
["Geneticists","United Kingdom","PHG Foundation ",null,1,"Not necessarily (see our answer to question 37).",1,null,"But safeguards need to be in place."]
["Geneticists","France","Fédération Française de Génétique Humaine",null,1,null,1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",null,1,"There would be no need for disclosure of predictive genetic test results in these situations in any case.",1,null,"Genetic risk should not necessarily be more highly weighed than life-style risks, although a longer term view could be taken regarding the likelihood of eventual disability."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,"It is better to define the limitation by type of insurance (e.g. basic health insurance) and value. ",null,1,"This may under exceptional circumstances, i.e. very large size policies, be appropriate to avoid that risk assessment on the side of the applicant motivates optional subscription without the insurance company knowing about such motives.    "]
["Universities","Hungary","Central European University, Budapest",null,null,null,null,1,"In case of high premiums, optional insurance pre-existing genetic test results may be taken into account."]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",null,1,"Any such prohibition should be applicable to all types of insurance. Further, insurance companies have methods of addressing the risk of adverse selection by engaging in risk classification and adjusting overall premiums accordingly.  ",1,null,"Any such prohibition should be applicable to all types of insurance."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",null,null,null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health"]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,null,1]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,null,1,null,"In both cases, when the risk of adverse selection is nil or virtually nil."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",null,1,null,1]

{"sheet":"Q39","index":42,"n_rows":39,"n_cols":9,"rows_kept":39,"cut":false,"hidden":false,"merged":[[35,3,35,8],[0,0,2,0],[0,1,2,1],[0,2,2,2],[17,3,17,8],[32,3,32,8],[0,3,0,8],[1,3,1,5],[1,6,1,8],[14,3,14,8]]}
["Activity sector","Country","Organisation","39. In the latter case, do you think that:\n"]
[null,null,null,"a. the insurance companies are able in present circumstances to bear unaided the possible consequences of adverse selection?",null,null,"b. incentives of various kinds would be needed (specify which kinds)?"]
[null,null,null,"YES","NO","Comments (if any)","YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",null,1,"I am not sure whether they are or not. It may be different for different conditions. Also, even in the case of adverse selection whereby people's demand for insurance is positively correlated with their being at risk of developing a disease (based on knowledge of a predictive test) and the insurer does not have access to that information (so cannot adjust the price accordingly), it still remains to be seen how the condition may actually develop.",1,null,"Possibly (not sure what the possibilities are). "]
["Patients","Europe","Autism-Europe",1,null,"The difficulties for people on low incomes to afford higher prices of the insurances needed for the coverage for the higher risks cannot be invoked as a justification for discriminating against people with genetic characteristics which are supposed to represent a higher risk. The coverage of the higher risk could be financed through contribution mechanisms based on individual revenues or income.",1,null,"Reimbursement of the higher cost of the insurance premiums could be provided through a discount on the income taxes."]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS",null,1,"It is entirely conceivable to arrange for a degree of public involvement in private insurance in such spheres, as is already the case, for example, with natural disasters (see Insurance Contracts Act, section 68-10). Public/private partnerships could cover the risks of vulnerable and/or ill people who are no longer able to support themselves.",1,1,"Such incentives should be considered, as is already the case for health care insurance (see the Health Care Insurance Act of 18 April 2010, published in the Belgian official gazette on 11 June 2010)."]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,null,1]
["Consumers","France","Confédération syndicale des familles (CSF)"]
["Consumers","France","Union nationale des associations familiales (UNAF)",1,null,null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,"The risk of adverse or anti-selection is overestimated by the insurers.",null,1]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,"These consequences are incorporated into actuarial calculations.",null,1]
["Insurance","Netherlands","Achmea",null,1,"Adverse selection will lead to attrition of the remains of profitability, because the economic crisis has forced the insurers to lower premiums to an unprecedented level. The only way out for many insurers will be to stop selling insurances (of the type involved).",1,null,"The government can provide funds to be accessed in case of excess of claims."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",null,1,"Adverse selection will lead to attrition of the remains of profitability, because the economic crisis has forced the insurers to lower premiums to an unprecedented level. The only way out for many insurers will be to stop selling insurances (of the type involved).",1,null,"The government can provide funds to be accessed in case of excess of claims."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,null,null,1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",1,null,"As long as insurers are allowed to perform their risk assessment without interference, they can mitigate their adverse selection consequences themselves. The minute an outside agency interferes with risk assessment to create adverse selection, this degrades an insurer's ability to mitigate those consequences that were deliberately created by that outside agency.",null,1,"Leave insurance risk assessment alone. "]
["Insurance","United Kingdom","Association of British Insurers - ABI",null,null,"In the Concordat and Moratorium, insurers of life insurance, critical illness cover and income protection are only able to bear the consequences of adverse selection (in respect of predictive genetic test results) because the number of policies that would be affected appears low. Should the situation change, this may need to be re-examined and it is unlikely that insurers would be able to continue unaided.",null,null,"Should a prohibition be required, incentives may be needed to help insurers with the consequences of adverse selection."]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",null,1,"Currently the impact of predictive genetic tests is still rather limited, due to the fact that only rare monogenetic diseases can be detected. But genomic medicine is evolving fast. As soon as valid predictive tests on common disease will be applied in clinical medicine, the situation may drastically change. The premiums of most insurances have already been lowered because of the heavy competition and the economic crisis does not allow to make high profits with the invested assets. Adverse selection would make the insurances no longer profitable, so in the end it's also worse for consumers, since insurers will withdraw products form the market which are not profitable any more.",null,null,"Refunding by the government or tax payers in case of excess of claims."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Any additional costs not covered by the government will eventually be passed on to the consumer.",null,1,"Depends on the solution, but insurers do not however have limitless supplies of funds, so any solution which results in more or higher claims will need compensation from either higher prices for all or specific targeted compensation."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,"It is not a question of preventing selection, but avoiding the use of predictive genetic test results which are not reliable enough. ",null,1]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1,null,null,1,null,"Legislative incentives."]
["Medical professionals","Luxembourg","Collège Médical",null,1,"The state must help to a degree to cushion the economic impact of regulations restricting private insurance activities.",1,null,"Measures to stimulate dialogue involving all the stakeholders including employers, with incentives to cover additional categories of risk alongside the compulsory insurance which forms part of any employment relationship."]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",null,null,"Without a greater understanding of actuarial decision-making and current bottom-line calculations, it is impossible to predict whether the insurance industry could financially withstand legislated minimum insurance with the above-described prohibitions. Given the exponential increase in the availability of genetic tests and information, it is likely to present a burden if no such test result information is available for consideration.",null,null,"Beyond scope of reviewers."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",null,1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",null,null,null,1]
["Geneticists","United Kingdom","PHG Foundation ",null,1,"The current economic climate suggests that a variety of sources of funding will be needed to fund all aspects of support (health care, social care, critical illness cover, retirement) given the potential for health care providers to more accurately target interventions at those at risk, and an aging population.",1]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,null,1,null,"Medical association, pharmaceutical association."]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"This is the underlying principle of insurance.",null,1,"Low and high risk subjects provide the insurance companies the opportunity to balance the consequences."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",null,1,null,1,null,"See our replies to previous questions."]
["Universities","Hungary","Central European University, Budapest",1,null,null,null,1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"Insurance companies address adverse selection by engaging in the underwriting process and adopting risk classification when ascertaining insurance coverage and premiums.  Therefore, insurance companies will adjust their overall premiums if the risk of adverse selection arises. A further submission can be made to the effect that knowledge of one's genetic characteristics and potential future health may motivate individuals to plan their lifestyle, diet, and treatment plans to maximise their health care. The end result may be that individuals are healthier and therefore less likely to require the benefits of insurance. On balance therefore, the risk of adverse selection as a result of knowledge of genetic characteristics is not as problematic as some may argue. In addition, at present, relatively few insurance applicants are availing of genetic technology benefits (however, in the future, use of genetic technology is likely to increase).   ",1,null,"The promotion of obligatory group insurance schemes may appeal to both the insurance applicant and the insurance company. This may be financially more attractive to insurance applicants, and premiums may be lower and therefore more accessible. For the insurance company, the larger the membership, the lower is the risk of anti-selection. "]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",null,null,"Do not know.",null,null,"Do not know."]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health"]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,null,1,null,"Financial incentives (concerning the level of premiums, for example)."]
["Consultative bodies","Spain","Spanish Bioethics Committee",null,1,"Possible consequences could be very costly for companies."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,null,1]

{"sheet":"Q40","index":43,"n_rows":39,"n_cols":18,"rows_kept":39,"cut":false,"hidden":false,"merged":[[35,3,35,17],[17,3,17,17],[14,3,14,17],[0,0,2,0],[32,3,32,17],[0,3,0,17],[1,3,1,5],[1,6,1,8],[1,9,1,11],[1,12,1,14],[1,15,1,17],[0,1,2,1],[0,2,2,2]]}
["Activity sector","Country","Organisation","40. Having regard to their social character, which are the risks to whose coverage the above prohibition should be applicable:\n"]
[null,null,null,"a. illness?",null,null,"b. invalidity?",null,null,"c. death?",null,null,"d. long-term care/dependence?",null,null,"e. retirement?"]
[null,null,null,"YES","NO","Comments (if any)","YES","NO","Comments (if any)","YES","NO","Comments (if any)","YES","NO","Comments (if any)","YES","NO","Comments (if any)"]
["Patients","Europe","Alzheimer Europe ",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Patients","Europe","Autism-Europe",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS"]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Consumers","France","Confédération syndicale des familles (CSF)",1,null,null,1,null,null,null,1,null,1]
["Consumers","France","Union nationale des associations familiales (UNAF)",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Unions","Europe","Confédération Européenne des Syndicats",1,null,"This also relates to insurance against occupational diseases and industrial accidents in countries where cover for this risk is provided by insurance schemes.",1,null,null,1,null,null,1,null,null,1]
["Insurance","Netherlands","Achmea",1,null,"Only for basic health care cover.",null,1,"Prohibition to decline disabled applicants for a disability insurance is impossible, as the insured condition has already happened and the applicant can file a claim directly after admission.",null,1,"Nobody needs a life insurance. Life insurances are commodities, so there are no reasons for prohibitions of any sort. Even mortgages are possible without life insurances (although in some countries banks will ask for a life insurance, it is not a prerequisite). ",null,1,"Prohibition to decline applicants in need of long-term care for a LTC insurance is impossible, as the insured condition has already happened and the applicant can file a claim directly after admission. ",null,1,"In cases where the applicant has no alternative (e.g. cover offered by employer), the insurer should be obliged to admit the applicant."]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,"Only for basic health care cover.",null,1,"Prohibition to decline disabled applicants for a disability insurance is impossible, as the insured condition has already happened and the applicant can file a claim directly after admission.",null,1,"Nobody needs a life insurance. Life insurances are commodities, so there are no reasons for prohibitions of any sort. Even mortgages are possible without life insurances (although in some countries banks will ask for a life insurance, it is not a prerequisite). ",null,1,"Prohibition to decline applicants in need of LTC for a LTC insurance is impossible, as the insured condition has already happened and the applicant can file a claim directly after admission. ",null,1,"In cases where the applicant has no alternative (e.g. cover offered by employer), the insurer should be obliged to admit the applicant."]
["Insurance","Netherlands","Nationale Nederlanden/ING",1,null,null,null,1,null,null,1,null,null,1,null,null,1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc.",null,1,"Leave insurance risk assessment alone.",null,1,"Leave insurance risk assessment alone.",null,1,"Leave insurance risk assessment alone.",null,1,"Leave insurance risk assessment alone.",null,1,"Leave insurance risk assessment alone."]
["Insurance","United Kingdom","Association of British Insurers - ABI"]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re",1,null,"For basic health care insurance cover.",null,1,"It is impossible to insure something that already has happened. So prohibition to refuse severely disabled applicants for a disability insurance is impossible.",null,1,"There is no compelling reason for a life insurance cover. It is a commodity, because even a mortgage is possible without a life insurance (although banks do like the extra reassurance of a life insurance). ",null,1,"It is impossible to insure something that already has happened. So prohibition to refuse applicants who are already in need of long-term care for a LTC insurance is impossible. ",null,1,"Only if the employer offers the cover and applicants have no reasonable alternative when they are refused. Question 41 allows only the option limited or unlimited amounts. As soon as valid predictive tests on common disease will be applied in clinical medicine, the situation may change drastically. This means that insurance products, even with a limited amount allowing adverse selection, would not be profitable anymore, since they have to be subsidised (by whom?)."]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited",null,1,"Basic health care is available for all without selection in most countries. Extended supplementary coverage is however usually subject to selection as otherwise only those who know they will most likely benefit from it will purchase it.",null,1,"Basic coverage is usually provided by the state or employer. Additional coverage needs to remain subject to selection.",null,1,"Death coverage in most countries is a purely voluntary purchase, so the costs of prohibition would be that much greater, as those who know they are significantly at risk will purchase and purchase more. This behaviour would increase the cost, which would actually deter those who know they are lower risks from purchasing as the insurance would represent poor value for them, thereby removing the possibility to cross-subsidise.",null,1,"Basic coverage is often provided by the state. Additional coverage needs to remain subject to selection.",null,1,"Pure pension savings need no selection, so no access to predictive test results is necessary but for annuities/impaired annuities selection is still required."]
["Medical professionals","France","Académie nationale de médecine (France)",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Medical professionals","Luxembourg","Collège Médical",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors",null,null,"Beyond scope of reviewers.",null,null,"Beyond scope of reviewers.",null,null,"Beyond scope of reviewers.",null,null,"Beyond scope of reviewers.",null,null,"Beyond scope of reviewers."]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",1,null,null,1,null,"Up to a certain amount of coverage.",1,null,"Up to a certain amount of coverage. ",1,null,"Up to a certain amount of coverage. ",1,null,"Up to a certain amount of coverage. "]
["Geneticists","Latvia","Latvian Society of Medical Genetics",1,null,null,1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,"For the reasons outlined in our previous answers.",null,1,null,null,1,null,null,1,null,null,1]
["Geneticists","France","Fédération Française de Génétique Humaine",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",1,null,"Genetic predisposition may provide no greater risk than that of unanticipated non-genetic illness.",1,null,"Only if the degree of invalidity can be specified and is inevitable.",1,null,"Only if early death is inevitable.",1,null,"Only if the degree of invalidity can be specified and is inevitable.",1,null,"Only if early retirement can be inevitably predicted."]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Universities","Hungary","Central European University, Budapest",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",1,null,"See our response to question 34.a.                                     ",1,null,"See our response to question 34.b.",1,null,"See our response to question 34.c.",1,null,"See our response to question 34.d.",1,null,"See our response to question 34.e."]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",1,null,null,1,null,null,null,1,null,1,null,null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,null,1,null,null,1,null,null,1,null,null,1]
["Consultative bodies","Spain","Spanish Bioethics Committee",1,null,null,1,null,null,null,1,null,1,null,null,1,null,"For the same reason as in our response to question 34."]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",1,null,null,1,null,null,1,null,null,1,null,null,1]

{"sheet":"Q41","index":44,"n_rows":39,"n_cols":13,"rows_kept":39,"cut":false,"hidden":false,"merged":[[35,3,35,12],[17,3,17,12],[14,3,14,12],[0,0,2,0],[32,3,32,12],[0,3,0,12],[1,3,1,4],[1,5,1,6],[1,7,1,8],[1,9,1,10],[1,11,1,12],[0,1,2,1],[0,2,2,2]]}
["Activity sector","Country","Organisation","41. Should this prohibition be applicable, for each of the above risks, to the total coverage or only up to a certain amount:\n"]
[null,null,null,"a. illness?",null,"b. invalidity?",null,"c. death?",null,"d. long-term care/dependence?",null,"e. retirement?"]
[null,null,null,"Limited amount","Unlimited amount","Limited amount","Unlimited amount","Limited amount","Unlimited amount","Limited amount","Unlimited amount","Limited amount","Unlimited amount"]
["Patients","Europe","Alzheimer Europe ",null,1,null,1,1,null,null,1,1]
["Patients","Europe","Autism-Europe",null,1,null,1,null,1,null,1,null,1]
["Consumers","Europe","Ligue des Usagers des Services de Santé - LUSS"]
["Consumers","France","CISS - Collectif Interassociatif sur la Santé",null,1,null,1,1,null,null,1,null,1]
["Consumers","France","Confédération syndicale des familles (CSF)"]
["Consumers","France","Union nationale des associations familiales (UNAF)",null,1,null,1,1,null,null,1,null,1]
["Consumers","Germany","Bund der Versicherten e.V.  (BdV) [Confédération des assurés]",null,1,null,1,null,1,null,1,null,1]
["Unions","Europe","Confédération Européenne des Syndicats",null,1,null,1,null,1,null,1,null,1]
["Insurance","Netherlands","Achmea",1,null,1,null,1,null,1,null,1]
["Insurance","Netherlands","IC Leven (Independent Committee Life)",1,null,1,null,1,null,1,null,1]
["Insurance","Netherlands","Nationale Nederlanden/ING",1]
["Insurance","Sweden","Svensk Försäkring","The consultation is reported on under \"General Comments\""]
["Insurance","United States of America","VFD Consulting, Inc."]
["Insurance","United Kingdom","Association of British Insurers - ABI"]
["Insurance","Europe","Insurance Europe","The consultation is reported on under \"General Comments\""]
["Reinsurance","Germany","Munich Re"]
["Reinsurance","Switzerland","Swiss Reinsurance Company Limited"]
["Medical professionals","France","Académie nationale de médecine (France)",null,1,null,1,null,1,null,1,null,1]
["Medical professionals","France","Conseil National de l'Ordre des Médecins (CNOM)",null,1,null,1,null,1,1,null,1]
["Medical professionals","Luxembourg","Collège Médical",1,null,1,null,1,null,1,null,1]
["Geneticists","Canada","Canadian Association of Genetic Counsellors"]
["Geneticists","Germany","Deutsche gesellschaft für humangenetik e.v. [German society of human genetics]",null,1,1,null,1,null,1,null,1]
["Geneticists","Latvia","Latvian Society of Medical Genetics",null,1,null,1,1,null,null,1,1]
["Geneticists","United Kingdom","PHG Foundation ",1,null,1,null,1,null,1,null,1]
["Geneticists","France","Fédération Française de Génétique Humaine",null,1,null,1,null,1,null,1,null,1]
["Geneticists","Europe","Genetic Committee of the European Union of Medical Specialities\n",null,1,1,null,1,null,1,null,1]
["Geneticists","Europe","European Society of Human Genetics (ESHG)",1,null,1,null,1,null,1,null,1]
["Universities","Hungary","Central European University, Budapest",1,null,1,null,1,null,1,null,1]
["Universities","Ireland","Centre for Disability Law and Policy, National University of Ireland",null,1,null,1,null,1,null,1,null,1]
["Consultative bodies","Austria","Advisory board for the Austrian Ministry of Health","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Austria","Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]",null,1,null,1,1,null,null,1,null,1]
["Consultative bodies","Finland","National advisory board on social welfare and health care ethics, Ministry of Social Affairs and Health"]
["Consultative bodies","France","Commission nationale consultative des droits de l'homme (CNCDH)","The consultation is reported on under \"General Comments\""]
["Consultative bodies","Greece","National Bioethics Commission",1,null,1,null,1,null,1,null,1]
["Consultative bodies","Spain","Spanish Bioethics Committee",null,1,null,1,null,null,null,1,1]
["Agencies/\nAuthorities","France","Commission Nationale Informatique et Libertés - CNIL",null,1,null,1,null,1,null,1,null,1]

{"sheet":"GeneralComments","index":45,"n_rows":9,"n_cols":3,"rows_kept":9,"cut":false,"hidden":false,"merged":[[0,0,1,0],[0,1,1,1],[0,2,1,2],[4,0,5,0],[4,1,5,1]]}
["Organisation","Country","General Comments"]
[]
["Svensk Försäking","Sweden","A letter was sent constituting a response to the consultation"]
["Association of British Insurers - ABI","United Kingdom","A letter was sent in addition to the replies to the questionnaire"]
["Insurance Europe","Europe","A letter was sent constituting a response to the consultation"]
[null,null,"A position paper was sent constituting a response to the consultation"]
["Advisory board for the Austrian Ministry of Health","Austria","A letter was sent constituting a response to the consultation"]
["Commission nationale consultative des droits de l'homme (CNCDH)","France","A memorandum was sent constituting a response to the consultation"]
["Bundeskanzleramt Österreich [Chancellerie fédérale d'Autriche]","Austria","A letter was sent in addition to the replies to the questionnaire"]

{"sheet":"Graph1","index":46,"n_rows":30,"n_cols":12,"rows_kept":30,"cut":false,"hidden":false,"merged":[]}
[]
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[null,"Insurance","Reinsurance","Medical professionals","Geneticists","Unions","Academics","Consultative bodies","Agencies/Authorities","Patients","Consumers"]
["Total",12,2,4,7,1,2,6,2,3,7,{"$f":"SUM(B30:K30)","v":46}]