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Genetic bio and dataBanking: Confidentiality and protection of data. Towards a European harmonisation and policy

Objective

Biobanks are huge repositories of human biological specimens and have a strategic importance for genetic research, clinical care and future treatments. This research project aims to investigate the ethical, legal and social issues of three types of biobanks: classical banking, population banking and forensic DNA databases. The first objective of the research project is to study the issue of privacy and confidentiality. There are reasons to believe that an unquestioned transfer of the traditional concept of confidentiality to the three types of biobanking described may be problematic, and that the concept needs to be re-analysed in these new contexts. The second objective is to investigate the existing regulatory framework of biobanks across the EU and to focus on the collection and analysis of legislation and regulation regarding the establishment, management and functioning of classical, population and forensic biobanks. The analysis of existing legislation will also provide some suggestions for "best rules".

The third objective is to investigate the ethical and policy issues related to forensic databases. In a post 9/11 era forensic genetic databases (i.e. crime, terrorism) generate many questions that have had no attention until now on a European level. The fourth objective is to investigate governance aspects of biobanks. The objective is to study the social, ethical, scientific-technological, and political-regulatory embedding of biobanks, to help the understanding of the ethical, socio-economic, scientific-technological and political implications of biobank development on the local and the national level, and in the transnational field and thereby to contribute to a better understanding of biobank governance. The results obtained within the different objectives described above will be of great use for the development of policy oriented recommendations concerning the organisation and management of the three kinds of genetic data and biobanks.

Call for proposal

FP6-2005-SCIENCE-AND-SOCIETY-14
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Funding Scheme

STREP - Specific Targeted Research Project

Coordinator

KATHOLIEKE UNIVERSITEIT LEUVEN
Address
Oude Markt 13
Leuven
Belgium

Participants (4)

UNIVERSITETET I OSLO
Norway
Address
Problemveien 7
Oslo
BUDAPESTI KOZEP-EUROPAI EGYETEM ALAPITVANY
Hungary
Address
Nador U. 9
Budapest
UNIVERSITY OF LEEDS
United Kingdom
Address
Woodhouse Lane
Leeds
UNIVERSITÄT WIEN
Austria
Address
Dr. Karl Lueger Ring 1
Wien