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Determining the ethical and legal interests in privacy and data protection for research involving the use of genetic Databases and Bio-banks


PRIVILEGED (Privacy in Law, Ethics and Genetic Data) 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.

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EU contribution
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Firth Court, Western Bank
United Kingdom

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