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.

DOI: https://doi.org/10.1080/14636778.2011.600435

Abstract

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.

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