HES: David Townend (Project co-ordinator with Mark Taylor, Sheffield), Claudia Pitz
Funder: EC FP6
The PRIVILEGED project was designed to consider the ethical and legal interests in privacy and data protection for research involving the use of genetic databases and biobanks. It was funded by the European Commission from 2007 to 2009, and had 32 member institutions from the European Union, European Economic Area and three non-European countries Israel, Japan and Taiwan. The Project was coordinated by Dr Mark Taylor based at the Sheffield Institute of Biotechnological Law and Ethics, School of Law, University of Sheffield, and David Townend based at the Faculty of Health, Medicine and Life Sciences, Department of Health, Ethics & Society, Maastricht University, with the help of partner institutions Biomedical Law Centre, University of Coimbra, Portugal and Department of Medical History and Ethics, Vilnius University, Lithuania.
The primary objectives of PRIVILEGED were organised through three workshops, reports, and publications. PRIVILEGED brought together the expertise of 45 national participants and their dialogues national, regional, and European/international levels. The dialogue between the participants was supported through organising them in three regions to explore whether there are significant differences in the social, cultural, and regulatory approaches to research into genetic information and biobanking. Each participant has produced a written national report in advance of each workshop, addressing guidance questionnaires. These reports form the basis of comparative Regional Reports prepared in advance of the workshops to assist the discussions, by the regional co-ordinators and principal investigators.