Securing our genetic health: Engendering trust in UK Biobank

Abstract

The recent development of genetic databases, or 'biobanks', in a number of countries reflects scientists' and policy makers' beliefs in the future health benefits to be derived from genetics research. In Britain, however, a proposal for a genetic database, UK Biobank, has been the focus of a number of concerns. Establishing consent and legitimacy for any controversial biomedical research involving the participation of human subjects is difficult; it is however, acute for UK Biobank given the scale of the project and the criticisms levelled at it. Analysing recently published documents pertaining to UK Biobank, this article examines how consent for the project has been discursively framed and how this is reflected in its governance. It is argued that the problem of organising consent has been framed narrowly in terms of adherence to a well-established repertoire of institutional mechanisms which serves to limit debate on the substantive issues at stake. There is little evidence of reflection on the adequacy of such mechanisms for dealing with the unique challenges posed by UK Biobank, including achieving the confidence and participation of a population with diverse perspectives on genetic research. It is concluded that a restricted public discourse about UK Biobank may contribute to a decline in confidence in regulatory systems governing biotechnology and science more generally. © Blackwell Publishing Ltd/Foundation for the Sociology of Health & Illness 2005.