Welcome to www.privireal.org
PRIVIREAL is a EUROPEAN COMMISSION Framework 5 funded project examining 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 PRIVIREAL project finished at the end of June 2005. The final meeting to discuss the results of the PRIVIREAL project and to allow the issues raised to be moved forward by relevant policy and decision makers, was held at the Finnish Permanent Representation, Brussels on 14 June 2005.
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.
The recommendations in full are now on-line.
An article on the project, and this results meeting, can be found on the EC's Research News pages.
This website is designed to display some of the project's research and aid persons looking for information in many fields. Clicking on 'Data Protection' on the left provides information on data protection from both international and European sources, as well as from individual country's legislation. Clicking on 'Research Ethics Committees' outlines international legislation and provides detailed information on individual countries, alongside comprehensive biblographies and links to other relevant sources of information. The Genetics webpages will shortly contain information relevant to legislation and genetic information in the PRIVIREAL countries.
If you have any questions or possible additions to the site - please use the 'Feedback' section.