PRIVILEGED (Privacy in Law, Ethics and Genetic Data) aims: will make recommendations for research practice and public policy-making, including regulatory options at the national and European level, to promote the optimal relation between research using genetic data and bio-banks and ethical interests in privacy. PRIVILEGED will identify, analyse and compare plural ethical, cultural, and social concepts of legitimate privacy interest engaged by research using genetic databases and bio-banks. It will articulate the relation between such concepts and the current regulation of research using genetic data and bio-banks. Describing areas of common understanding while also showing points of difference throughout the EU, EEA, NAS, Israel, Japan and Taiwan (the research area), PRIVILEGED will provide a comprehensive and systematic study of the inter-relationship between privacy interests and advances in genetic science and information technology within a diverse cultural and regulatory context. Assessment will be made of both the coherence and adequacy of existing regulation, in particular data protection, for the protection and promotion of both individual and group interests in privacy. PRIVILEGED will bring together experts in medicine, public health, philosophy, ethics, science and law from across the whole research area. A series of workshops, web-resources, national and comparative papers will be co-ordinated through three centres (Lithuania, Portugal and the UK) to address points of both potential conflict and synergy within and between the interests of science and privacy, individual and groups, and diverse cultures and fundamental ethical principles.
Coordinator: Sheffield Institute of Biotechnological Law and Ethics, School of Law, University of Sheffield (UK), Biomedical Law Centre, University of Coimbra (Portugal), Department of Medical History and Ethics, University of Vilnius (Lithuania).
Project partners:
Ethics Committee of the Medical University of Graz (Austria),
Centre Biomedical Ethics and Law, Catholic University of Leuven (Belgium),
Medical University of Sophia (Bulgaria),
Cyprus National Bioethics Committee (Cyprus),
Masarykova Univerzita v Brne (Czeck Republic),
University of Copenhagen, (Environmental Health,) (Denmark),
University of Copenhagen, (Law,) (Denmark),
Institute of Public Health, University of Copenhagen (Denmark (Sweden)),
University of Tartu (Estonia),
Helsinki University Central Hospital (Finland),
Medethic (France),
University of Wuppertal (Germany),
University of Bonn (Germany),
National School of Public Health (Greece),
Central European University (Hungary),
University of Iceland (Iceland),
Garante per la Protezione dei Dati Personali (Italy),
Central Medical Ethics Committee of Latvia (Latvia),
Joe Louis Grech Centre for Bioethics Organisation (Malta),
Academic Medical Center (Netherlands),
University of Oslo (Norway),
The Norwegian Social Science Data Service (Norway),
Institute of Medical Ethics and Bioethics (Slovak Republic),
Slovenian Academy of Sciences and Arts (Slovenia),
Universidad de Deusto (Spain),
Uppsala University (Sweden),
Ben-Gurion University of the Negev (Israel),
Kobe University (Japan),
National Tsing Hua University (Taiwan).
Funded by: European Commission
Funding period: 2007-2009
Project website: http://www.privileged.group.shef.ac.uk/
