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Constructing Participation in Genetic Databases: Citizenship, Governance and Ambivalence.

Tutton, R. (2007) Constructing Participation in Genetic Databases: Citizenship, Governance and Ambivalence. Science Technology and Human Values, 32 (2). pp. 172-195. ISSN 1552-8251

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Abstract

This paper discusses the discourse of ‘participation’ in the context of genetic databases. Focusing on UK Biobank, it suggests that this discourse can be seen as a reflexive institutional response to public ambivalence towards science and expertise. Drawing on empirical evidence from focus groups, I explore how people from various backgrounds constructed and contested two different kinds of participation in UK Biobank. The first relates to people providing research materials to genetic databases and the second to people becoming ‘co-decision makers’ in these projects. My analysis highlights how focus groups positioned themselves and others in relation to UK Biobank and drew on a variety of ‘discursive repertoires’, such as altruism, public ignorance, expertise, and lay empowerment. I conclude that discourses of participation reflect the way people position themselves and others - as experts, publics, patients, or research subjects - in relation to the opportunities and uncertainties of new biomedical research.

Item Type: Article
Journal or Publication Title: Science Technology and Human Values
Additional Information: RAE_import_type : Journal article RAE_uoa_type : Sociology
Uncontrolled Keywords: genetic databases • biobanks • participation • citizenship • ambivalence
Subjects: H Social Sciences > HM Sociology
Departments: Faculty of Arts & Social Sciences > Sociology
ID Code: 3504
Deposited By: ep_importer
Deposited On: 13 Mar 2008 15:29
Refereed?: Yes
Published?: Published
Last Modified: 17 Sep 2013 08:22
Identification Number:
URI: http://eprints.lancs.ac.uk/id/eprint/3504

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