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First published January 2005

Gene Week: a novel way of consulting the public

Abstract

Within academic circles, the “deficit” model of public understanding of science has been subject to increasing critical scrutiny by those who favor more constructivist approaches. These suggest that “the public” can articulate sophisticated ideas about the social and ethical implications of science regardless of their level of technical knowledge. The seminal studies following constructivist approaches have generally involved small-scale qualitative investigations, which have minimized the pre-framing of issues to a greater or lesser extent. This article describes the Gene Week Project, sponsored by the Wellcome Trust, which attempted to extend this work to a large-scale consultation on genetics and health through the medium of a local daily newspaper. Readers were invited to respond to a set of open-ended questions that accompanied stimulus material published each day for five consecutive weekdays. The articles were written with the intention of extending the limited range of discourses around genetics and biotechnology that are usually presented by the popular media (hope, fear, tragedy and bravery). Responses raised overarching issues about the place of emerging health technologies in society reminiscent of previous open-ended consultations in this field. The paper ends with a critical discussion about the potential of this method to contribute to the further development of open-ended public consultations.

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1 Lancashire Evening Post website archive (accessed 20 May 2004) http://www.lep.co.uk.
2 Two examples of media-based consultations:
BBC Hot Topics—Intelligence—Nature or Nurture?
Do you inherit intelligence from your parents?
Yes
No ○
(accessed 13 July 2004) http://www.bbc.co.uk/science/hottopics/intelligence/clever.shtml.
geneforum.org—building an informed citizenry for the gene age
Participate in an interactive scenario on genetic engineering!
If you could choose some of the genes that your child will inherit, would you do it?
yes no maybe
(accessed 13 July 2004) http://www.geneforum.org/getinvolved/igm.
3 The exception may be the HFEA consultation on sex selection, see Figure 2, but this consultation was based on a questionnaire (HFEA, 2003).

References

Barns, I., Schibeci, R., Davison, A. and Shaw, R (2000) “’What Do You Think about Genetic Medicine?’ Facilitating Sociable Discourse on Developments in the New Genetics,” Science, Technology and Human Values 25(3): 283–308 .
Collins, H.M. and Evans, R. (2002) “The Third Wave of Science Studies: Studies of Expertise and Experience,” Social Studies of Science 32(2): 235–296 .
Cooper, L. (1995) Voices Off: Tackling the Democratic Deficit in Health. London: Institute for Public Policy Research .
Dickson D. (2000) “Science and its Public: the Need for a ‘Third Way,’” Social Studies of Science 30(6): 917–923 .
Dingwall, R. (1997) “Accounts, Interviews and Observations,” in G. Miller and R. Dingwall (eds) Context and Method in Qualitative Research, pp.51–65. London: SAGE .
Dunkerley, D. and Glasner, P. (1998) “Empowering the Public? Citizen’s Juries and the New Genetic Technologies,” Critical Public Health 8(3): 181–192 .
Epstein, S. (1995) “The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials,” Science, Technology and Human Values 20: 408–437 .
Finney, C. (1999) “Extending Public Consultation via the Internet: the Experience of the UK Advisory Committee on Genetic Testing Electronic Consultation,” Science and Public Policy 26(5): 361–373 .
Harrison, S. and Mort, M. (1998) “Which Champions, Which People? Public and User Involvement in Health Care as a Technology of Legitimation,” Social Policy and Administration 32(1): 60–70 .
House of Lords (2000) Science and Society. Select Committee on Science and Technology. HL Paper 38. London: The Stationery Office .
Human Fertilisation and Embryology Authority (HFEA) (2003) Sex Selection: Options for Regulation. London: HFEA .
Human Genetics Commission (HGC) (2002) Inside Information: Balancing Interests in the Use of Personal Genetic Data. London: Department of Health .
Human Genetics Commission (HGC)/Human Fertilisation and Embryology Authority (HFEA) (2001) Outcome of the Public Consultation on Preimplantation Genetic Diagnosis. London: HFEA .
Irwin, A. (2001) “Constructing the Scientific Citizen: Science and Democracy in the Biosciences,” Public Understanding of Science 10: 1–18 .
Irwin, A. and Wynne, B. (1996) Misunderstanding Science? The Public Reconstruction of Science and Technology. Cambridge: Cambridge University Press .
Jasanoff, S. (2003) “Breaking the Waves in Science Studies: Comment on H.M. Collins and Robert Evans, ‘The Third Wave of Science Studies,’” Social Studies of Science 33(3): 389–400 .
Kerr, A., Cunningham-Burley, S. and Amos, A. (1997) “The New Genetics: Professionals’ Discursive Boundaries,” Sociological Review 45: 279–303 .
Kerr, A., Cunningham-Burley, S. and Amos, A. (1998a) “The New Genetics and Health: Mobilizing Lay Expertise,” Public Understanding of Science 7: 41–60 .
Kerr, A., Cunningham-Burley, S. and Amos A. (1998b) “Drawing the Line: an Analysis of Lay People’s Discussions about the New Genetics,” Public Understanding of Science 7: 113–133 .
Kohring, M. and Gorke, A. (2000) “Genetic Engineering in the International Media,” New Genetics and Society 19(3): 345–363 .
Levitt, M. (1997) “Natural Ways Are Better: Adolescents and the ‘Anti-obesity’ Gene,” Science and Engineering Ethics 3(3): 305–315 .
Levitt, M. (1999) “Drawing Limits: Contemporary Views on Biotechnology,” Journal of Beliefs and Values 20(1): 41–50 .
Levitt, M., Weiner, K. and Goodacre, J. (2004) “Stimulating Public Debate on the Ethical and Social Issues Raised by the New Genetics,” in S. Holm and M. Jonas (eds) Engaging the World: the Use of Empirical Research in Bioethics and Regulation of Biotechnology, pp.109–118. Amsterdam: IOS Press .
Michael, M. (2002) “Comprehension, Apprehension, Prehension; Heterogeneity and the Public Understanding of Science,” Science, Technology and Human Values 27(3): 357–378 .
Nuffield Council on Bioethics (2002) Genetics and Human Behaviour: The Ethical Context. London: Nuffield Council on Bioethics .
People Science and Policy Ltd (2002) BioBank UK: A Question of Trust. Report Prepared for the Medical Research Council and The Wellcome Trust. London: People Science and Policy Ltd.
Petersen, A. (2001) “Biofantasies: Genetics and Medicine in the Print News Media,” Social Science and Medicine 52: 1255–1268 .
Popay, J. and Williams, G. (1996) “Public Health Research and Lay Knowledge,” Social Science and Medicine 42(5): 759–768 .
Prior, L. (2003) “Belief, Knowledge and Expertise: the Emergence of the Lay Expert in Medical Sociology,” Sociology of Health and Illness 25: 41–57 .
Purdue, D. (1999) “Experiments in the Governance of Biotechnology: a Case Study of the UK National Consensus Conference,” New Genetics and Society 18(1): 79–99 .
Rowe, G. and Frewer, L (2000) “Public Participation Methods: a Framework for Evaluation,” Science, Technology and Human Values 25(1): 3–29 .
Smart, A. (2003) “Reporting the Dawn of the Post-genomic Era: Who Wants to Live for Ever?,” Sociology of Health and Illness 25(1): 24–49 .
Sturgis, P. and Allum, N. (2004) “Science in Society: Re-evaluating the Deficit Model of Public Attitudes,” Public Understanding of Science 13: 55–74 .
Voss, G. (2000) Report to the Human Genetics Commission on Public Attitudes to the Uses of Human Genetic Information. London: Human Genetics Commission .
Webster, P. and Henderson, M. (2002) “Blair Condemns Protesters Who Thwart Science,” The Times (London) 20 May: 1-1 .
Wellcome Trust (1998) Public Perspectives on Human Cloning. London: Wellcome Trust .
Wellcome Trust (2003) Public Engagement: Promoting Public Involvement (accessed 20 May 2004) http://www.wellcome.ac.uk/en/1/pinpub.html.
Wellcome Trust/Medical Research Council (MRC) (2000) Public Perceptions of the Collection of Human Biological Samples. London: Wellcome Trust/Medical Research Council .
Wynne, B. (1996) “Misunderstood Misunderstandings: Social Identities and Public Uptake of Science,” in A. Irwin and B. Wynne (eds) Misunderstanding Science?The Public Reconstruction of Science and Technology. Cambridge: Cambridge University Press .
Wynne, B. (2003) “Seasick on the Third Wave? Subverting the Hegemony of Propositionalism. Response to Collins and Evans (2002),” Social Studies of Science 33(3): 401–417 .
Zimmerman, C., Bisanz, G., Klein, J. and Klein, P. (2001) “Science at the Supermarket: a Comparison of What Appears in the Popular Press, Experts’ Advice to Readers, and What Students Want to Know,” Public Understanding of Science 10: 37–58 .

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Article first published: January 2005
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Mairi Levitt
Centre for Economic and Social Aspects of Genomics (CESAGen), Furness College, Lancaster University, LA1 4YG, UK[email protected]
Kate Weiner
Institute for the Study of Genetics, Biorisks & Society, Law and Social Sciences Building, University Park, Nottingham NG7 2RD, UK
John Goodacre
Lancashire School of Health and Postgraduate Medicine, University of Central Lancashire, Preston PR1 2HE, UK

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