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

• Published in: Science, technology, & human values Vol. 32; no. 2; pp. 172 - 195
• Main Author: Tutton, Richard
• Format: Journal Article
• Language: English
• Published: Thousand Oaks, CA Sage Publications 01.03.2007; SAGE Publications; Sage; SAGE PUBLICATIONS, INC
• Subjects: Altruism; Ambivalence; Biobank; Biological altruism; Biological specimen banks; Biomedical materials; Biomedicine; Citizen participation; Citizenship; Decision analysis; Decision makers; Discourses; DNA; Empirical analysis; Empowerment; Experts; Focus groups; General points; Genetic research; Genetics; Governance; History of science and technology; History of social organization of science and scientific research; Human genetics; Ignorance; Materials selection; Medical genetics; Medical research; Participation; Public opinion; Public participation; Research ethics; Research subjects; Sciences; United Kingdom; United Kingdom; United Kingdom > UK; genetic databases; participation; ambivalence; biobanks; citizenship; Participation; Human genome; Citizenship; Genetics; Biology; Century 21

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...