Who is privy to medical research data? How effective is the EU’s Data Protection Directive at safeguarding the fundamental rights and freedoms of medical research subjects? European researchers set out to answer this question in an EU-funded investigation which recently presented its findings in Brussels.
The Data Protection Directive generally aims to remove obstacles to the flow of personal data by securing EU citizen’s fundamental rights (in particular, privacy). To some extent, each country has implemented the 1995 Directive differently and it is unclear how medical research, in particular, will be affected in the law and the practice of ethics committees. The EU-funded PRIVIREAL project was created to fill this knowledge gap.
The project’s findings suggest that in some cases not enough is being done in Member States to protect the rights and freedoms of people involved in medical research programmes, and that more effort is needed to communicate this to national ethics committees responsible for reviewing research proposals.
The 42-month project was led by Professor Deryck Beyleveld and David Townend of Sheffield Institute of Biotechnological Law and Ethics, University of Sheffield (UK). It involved 49 individual and institutional members in 27 countries, including new EU Member States, Candidate Countries and Norway.