The new EU data protection regulation proposal threatens future register-based research

The draft report on the EU data protection regulation proposal from the Committee on Civil Liberties, Justice and Home Affairs is now available on the internet. It appears to be a systematic weakening of the possibilities to continue and/or develop better systems for population register based medical and social research, since it puts additional demands on informed consent and suggests deletion of the special standing of scientific research in terms of the possibility to use register data without consent or with a simplified procedure for consent. It also puts a very strong emphasis on the power of the proposed European Data Protection Board to decide about how to obtain consent.

Links to: a copy of the draft report (with explanatory statement on p. 211-217), draft report excerpts which are interesting from a research perspective and to further information.

It is probably be very important to make researcher's opinions on this draft report known.

The information above was submitted by Magnus Stenbeck, project manager of the SIMSAM-INFRA project.