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Human Rights and Biomedicine

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  1. Human Rights and Biomedicine
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  4. Neurotechnologies and Human Rights Framework: do we need new rights?
  5. Round table - rapporteurs

Rapporteur général

Siobhan O'Sullivan

Siobhan O'Sullivan

Vice-Présidente du DH-BIO

Le professeur Siobhán O'Sullivan est la responsable de la bioéthique au Ministère de la Santé et est chargée de rédiger des conseils politiques et des instruments législatifs sur les questions liées à la bioéthique. Elle est également professeur au Royal College of Surgeons Ireland, où elle enseigne l'éthique et le droit des soins de santé et participe à l'élaboration de programmes. De 2002 à 2010, le professeur O’Sullivan a été directrice du Conseil irlandais pour la bioéthique, un organisme indépendant et autonome chargé d’examiner les questions éthiques soulevées par les progrès de la science et de la médecine. Elle est vice-présidente du Groupe européen d'éthique des sciences et des nouvelles technologies, un organisme indépendant et multidisciplinaire qui conseille la Commission européenne dans le cadre de la législation ou des politiques communautaires. Elle a été membre du Conseil consultatif pour la science, la technologie et l’innovation, l’organe consultatif de haut niveau du gouvernement irlandais sur les questions de politique en matière de science, de technologie et d’innovation (STI). Elle a obtenu son doctorat en médecine du Karolinska Institutet de Stockholm en 1998 et détient une maîtrise en éthique et droit de la santé et une maîtrise en droit des droits de l'homme.

Rapporteurs

Alessandra Pierucci

Alessandra Pierucci

Chair of the Consultative Committee of Convention108 of the Council of Europe (T-PD) (NBC)

Alessandra Pierucci is a lawyer and has been working for several years at the Italian Data Protection Authority. She has been actively involved in data protection at EU, OECD, and Council of Europe level. She has long been a member of Consultative Committee of Convention 108, of which she became Chair in 2016. She worked for the Council of Europe dealing with human rights in the Information Society. As part of her research activity, she has published several papers concerning fundamental rights and data protection issues on juridical journals and books. She has taught data protection in post graduate courses in some European universities.

Karen S. Rommelfanger

Karen S. Rommelfanger

President and CEO, Institute of Neuroethics

Dr. Karen S. Rommelfanger is a neuroethics strategist and researcher. She received her PhD in neuroscience and received postdoctoral training in neuroscience and neuroethics. Her research explores how evolving neuroscience and neurotechnologies challenge societal definitions of disease and medicine. Dr. Rommelfanger is an Associate Professor in the Departments of Neurology and Psychiatry and Behavioral Sciences. She also Directs the Neuroethics and Neurotech Innovation Collaboratory and the Neuroethics Program Director at Emory University’s Center for Ethics. She holds editorial positions as Senior Associate Editor at the American Journal of Bioethics Neuroscience and is first neuroethicist to be called to the editorial advisory board of Neuron. She is dedicated to cross-cultural work in neuroethics is co-chair of the Neuroethics Workgroup of the International Brain Initiative and collaborates with the Organization for Economic Cooperation and Development on implementing responsible neurotechnology recommendations. For the NIH, she is an appointed member to the NIH BRAIN Initiative Neuroethics Working Group and served as Neuroethics Subgroup member of the Advisory Committee to the Director at NIH for designing a roadmap for BRAIN 2025. Dr. Rommelfanger’s engages in cross-sectoral work as a member of the Global Futures Council of the World Economic Forum and neuroethics advisor with BrainMind a community of entrepreneurs and investors. A key part of her work is fostering dialogue across multiple stakeholders in neuroscience. As such she is a frequent contributor and commentator in popular media such as NPR, The New York Times, USA Today and The Huffington Post. She is founder of the newly formed international neuroethics think tank-Institute of Neuroethics (IoNx) which is dedicated to neuroscience, ethics, inclusivity, and diplomacy.

Hervé Chneiweiss

Hervé Chneiweiss

Head of Neuroscience Paris Seine Research Center at Sorbonne University, Chairperson of the Ethics Committee of France’s National Institute of Health and Medical Research (INSERM), and Chairperson of the International Bioethics Committee of UNESCO (IBC)

Hervé Chneiweiss est neurologue et neuroscientifique, directeur de recherche au CNRS, il a été impliqué dans les recherches neurogénétiques sur les maladies telles que les ataxies cérébelleuses puis les mécanismes moléculaires impliqués dans la plasticité gliale et le développement de tumeur cérébrale. Les approches techniques comprennent la protéomique, le métabolisme, l’épigénétique, les cultures cellulaires, les modèles animaux, la cellule unique.

Il est actuellement directeur du centre de recherche Neuroscience Paris Seine - IBPS (CNRS UMR8246 / Inserm U1130 / Sorbonne Université). Il a publié plus de 170 articles scientifiques originaux (h=46). HC est également impliqué dans la bioéthique, d’abord (2000-2002) conseiller pour les sciences de la vie et de la bioéthique du ministre de la recherche et de la technologie, membre du Conseil Scientifique de l’Office Parlementaire pour les choix Scientifiques et Techniques (2003-2016), membre du Comité d’éthique consultatif national (CCNE ; 2013-2017), et actuellement en tant que président du Comité d’éthique de l’Inserm et du comité international de bioéthique de l’UNESCO. Ancien rédacteur en chef de Médecine/Sciences (2006-16). Il a publié plusieurs livres pour le grand public (dernier : « Notre Cerveau », L’Iconoclaste, 2019).

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