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Democratic governance of genomics: the case of UK Biobank

Papaioannou, Theo (2012). Democratic governance of genomics: the case of UK Biobank. New Genetics and Society, 31(2) pp. 111–133.

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Biobanks are collections of human biological tissue used for genomics research. This promises a better understanding of the gene-based contribution to common disease and development of a more personalized approach to healthcare with safer drugs and more effective treatment. However, biobanks are also controversial owing to the ethical, legal, social and political issues raised about their collection and use of biological samples. Therefore, their democratic governance is not only a normative challenge but also an empirical one. This paper is concerned with both challenges: it attempts to “evaluate” processes of democratic governance of genomics by focusing on the case of UK Biobank. The overall argument is that although the UK Biobank performs well in terms of general democratic governance structures, there are epistemological and practical limits to specific democratic governance processes.

Item Type: Journal Article
Copyright Holders: 2012 Taylor & Francis
ISSN: 1469-9915
Keywords: governance; genomics; UK Biobank
Academic Unit/Department: Mathematics, Computing and Technology > Engineering & Innovation
Mathematics, Computing and Technology
Interdisciplinary Research Centre: Centre for Citizenship, Identities and Governance (CCIG)
OpenSpace Research Centre (OSRC)
Innovation, Knowledge & Development research centre (IKD)
Item ID: 33200
Depositing User: Theo Papaioannou
Date Deposited: 15 Mar 2012 09:05
Last Modified: 18 Jan 2016 14:01
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