Privacy in Research Ethics & Law (PRIVIREAL)

The Privireal project examined the implementation of the Data Protection Directive 95/46/EC in relation to medical research and the role of ethics committees. The Directive, in general, aims to remove obstacles to the flow of personal data by requiring a high level of protection of fundamental rights (in particular, privacy) in the Member States. Each State has implemented the Directive differently and it is unclear how medical research, specifically, will be affected. This project was created to gather information regarding the implementation of this Directive across Europe.  The recommendations were presented initially relating to the adequacy of domestic implementation of the provisions of Directive 95/46/EC, focusing particularly on medical research. Attention was then given to the role of REC review in relation to the protection of rights granted to research participants by this Directive, advising on the remit that needs to be given to RECs to ensure that such review fully protects those rights. CELAB‘s involvement in the Privacy through Law and Ethics in Genetic Data (PRIVILEGED) project is the direct outcome of this project.

For more information about the project please consult the following website: http://www.privireal.org