Transformations in Genetic Subjecthood

Transformations in Genetic Subjecthood Research sponsored by the Economic and Social Research Council and an Innovative Health Technologies Programme Project

P R O J E C T U P D A T E J U L Y 2 0 0 3

Aims of the Project Government’s Medical Research Council and the Wellcome Trust, The project began in April 2002 and Britain’s largest medical research involves looking at how different charity. We have asked people to groups of people talk about the social talk about who they think should aspects of genetics. In particular, we control these types of developments, are interested in people’s accounts of and who should have access to the expertise and citizenship where genetic information that they genetics is concerned. We are uncover. exploring people’s perceptions of their rights to access genetic We have also attended two information and to influence genetic conferences that were designed to research and service provision. bring about greater public People’s views of their and others’ involvement in debates about responsibilities for understanding genetics. We were how ‘specialists’ genetics, participating in genetic and ‘lay people’ talked about the research and genetic testing, and issues at stake and how they seemed sharing that information with other to relate to each other at these people, are also being explored. We events. are especially interested in how these rights and responsibilities are related Preliminary Findings to people’s sense of their and others’ status as experts, patients, We are still analysing the findings of consumers, or member of the public. these discussion groups and the conferences that we attended. So far, Fieldwork we have found that people took on a variety of roles when they discussed We have now held 11 discussion these issues. What counted as groups with a total of 42 people. expertise also varied considerably. It These people have included school sometimes involved narrowing the students, members of the discussion to specific technical Government’s Human Genetics examples, but it could also involve Commission, genetic counsellors, overarching analyses of the scientific refugees, university researchers, and and the political context of genetics. patient support groups. In these We have also found that, although groups we talked about the patenting people expressed themselves in of genetic tests, using the case of different ways, they came to Myriad, a company that has patents remarkably similar views on some on two genes linked to hereditary issues, such as the patenting of breast cancer. We also talked about genes. These views seemed to be plans for the UK Biobank, a large related to a common set of moral genetic database funded by the values rather than simply being a matter of expert knowledge or direct experiences of illness. Project Team

Presentations Dr Anne Kerr (Principal Investigator) Lecturer Department of Sociology Kerr, A. (2003) 'When is a citizen an University of York expert? When is an expert a citizen?’ York YO10 5DD Invited presentation to the Science Tel: 01904 432639 Communication Conference jointly Fax: 01904 433043 organised by The British Association Email: [email protected] and The Royal Society, 22-23 May 2003, London. Dr Richard Tutton (Research Fellow) Science and Technology Studies Unit Tutton, R., Kerr, A. & Cunningham- Department of Sociology Burley, S. (2002) 'Exploring formations University of York of genetic subjecthood'. Paper York YO10 5DD presented at BSA Medical Sociology Tel: 01904 433047 Group Conference, 28 September Fax: 01904 433043 2002 University of York, York. Email: [email protected]

Publications Dr Sarah Cunningham-Burley (Principal Investigator) Reader Kerr, A. (2003) ‘Rights and Department of Community Health Responsibilities in the New Genetics Sciences Era’ Critical Social Policy, 23 (2) 208- University of Edinburgh 226 Edinburgh. EH8 9AG Tel: 0131 650 3217 Kerr, A. (2003) ‘Regulating Genetics: Email: [email protected] Reifying Choice and Progress’, New Genetics and Society, 22 (2) 141-56 Mrs Gillian Robinson (Project Administrator) Science and Technology Studies Unit Department of Sociology Project web site University of York York, UK http://www.york.ac.uk/res/tigs/ YO10 5DD Tel: 01904 432630 Email: [email protected]