On 1 March 2019, I submitted to the United Nations Human Rights Council my draft report on the right to privacy, including a draft guidance on the protection and use of health-related data as submitted by the Health Data taskforce I set up in 2016.
I have opened this draft guidance on health data to public consultation, which will provide an opportunity to debate legal and ethical issues arising in the area of health data, identify content gaps and new areas, and shape the treatment of these issues in the final report. The latest version of a document which is very much workin-progress is attached for your consideration, in preparation of the international consultation meeting being held in Strasbourg on 11-12 June 2019, back to back with the plenary session of the T-PD (13-14 June 2019). Your preliminary comments are solicited by 11th May 2019.
Professionals in the public and private sectors, with an interest in health data, such as public policy and decision makers, educators, health practitioners, commercial service providers, academics, non-government organisations and civil society are welcome to participate in this consultation.
RSVP your wish to register in the public consultation in Strasbourg (participation is free) to Marie-Catherine Wagner and Mariana Rissetto also by 11th May 2019. Seating is limited to 120 and registration is on a first come first served basis.
This event is being supported by the Council of Europe, and I would like to thank the Council of Europe for assisting my mandate by hosting the public consultation meeting in its premises in Strasbourg.
Joseph A. Cannataci – UN Special Rapporteur on the right to privacy
[Original letter available here]