title: Enterprising or altruistic selves? Making up research subjects in genetics research.
abstract: The emergence of direct-to-consumer (DTC) personal genomics companies in 2007 was accompanied by considerable media attention and criticism from clinical geneticists and other health professionals, regulators, policy advisors, and ethicists. As well as offering genetic testing services, some firms are also engaged in building their own databases and conducting research with the data obtained from their customers. In this paper, we examine how one of these companies, 23andMe, is creating a certain kind of 'research subject' in opposition to that constituted in conventional forms of disease research. Drawing on debates about neoliberalism, contemporary health discourses and subjectivity, we consider two kinds of subjectivities produced through the discursive and material practices of 23andMe and UK Biobank, namely, 'enterprising' and 'altruistic' selves. We argue that the 23andMe model promotes the idea that curiosity about one's genome on the one hand, and participation in research on the other, are not only compatible but complementary aspects of being an entrepreneurial subject of contemporary health and medicine framed by the technologies of web 2.0.
authors.affiliation: ESRC Centre for Economic and Social Aspects of Genomics (Cesagen), Department of Sociology, Lancaster University. r.tutton@lancaster.ac.uk
authors.forename: Richard
authors.initials: R
authors.lastname: Tutton
authors.forename: Barbara
authors.initials: B
authors.lastname: Prainsack
mesh_terms: D000533:Altruism; D035843:Biomedical Research / Q000941:ethics*; D003657:Decision Making; D032984:Ethics, Research; D005819:Genetic Markers; D036281:Genetic Research / Q000941:ethics*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D020407:Internet; D056186:Metagenomics / Q000941:ethics; D009042:Motivation; D018579:Patient Selection / Q000941:ethics*; D011795:Surveys and Questionnaires; D006113:United Kingdom
chemical_list: D005819:Genetic Markers