As health care applications derived from human genetics research are likely to move increasingly from ‘clinic to community’, there is growing interest not just in how patients understand and take up health-related genetic information but also in the views of the wider population, as well as a range of professional groups. In this paper, issues relating public knowledge and public trust are raised and discussed in an attempt to move forward debates about public involvement in genomic research and the role of sociologists within interdisciplinary teams. As the field of public understanding of science has developed, we have seen a shift from a focus on the lack of scientific literacy as problem to a recognition of the range of different knowledges that people have and use as they confront science and technology in their everyday lives. As a mood for dialogue pervades many institutions in their relations with ‘publics’, attention must now be paid to the way in which knowledge and expertise is expressed, heard and acted upon in dialogic encounters. There is increasing concern about public trust in science and calls to increase public confidence, particularly through more open engagement with a range of publics. However, lack of trust or loss of confidence may be constructed as problems rather than reflecting empirical reality, where more complex relationships and attitudes prevail. Lack of trust is often privatized, deeply rooted in lived experience and routinely managed. Trust relations are generally characterized by ambivalence, uncertainty and risk, and are always provisional. Drawing on selected literature and empirical research to review and illustrate this field, this paper argues that scepticism or ambivalence on the part of publics are not necessarily problems to be overcome in the interest of scientific progress, but rather should be mobilized to enhance open and public debates about the nature and direction of genomics research, medicine, and the related social and ethical issues. Just as there can be no resolute expression of public knowledge or public opinion, it is unlikely that there is a resolute expression of public trust in genomics. However, ambivalence and scepticism can be harnessed as powerful resource for change, whether through the mobilization of public knowledges or the development of greater reflexivity within scientific institutions. This demands a sharing of power and greater public involvement in the early stages of policy formation and scientific and medical agenda setting.

Keywords:
Public trust in science, Lay expertise, Genetic knowledge
1.
Irwin A, Michael M: Science, Social Theory and Public Knowledge. Maidenhead, Open University Press, 2003.
2.
Irwin A, Wynne B (eds): Misunderstanding Science? The Public Reconstruction of Science and Technology. Cambridge, Cambridge University Press, 1996.
3.
Wynne B: Public understanding of science; in Jasanoff S, Markel G, Petersen J, Pinch T (eds): Handbook of Science and Technology Studies. London, Sage, 1995.
4.
Michael M: Lay discourses of science: science-in-general, science-in-particular, and self. Sci Technol Hum Values 1992;17:313–333.
5.
Macintyre S: The public understanding of science of the scientific understanding of the public: a review of the social context of ‘the new genetics’. Public Understanding Sci 1995;4:223–232.
6.
Kerr A: Genetics and Society: A Sociology of Disease. London, Routledge, 2004.
7.
Michael M, Carter S: The facts about fictions and vice versa: public understanding of human genetics. Sci Cult 2001;10:115–120.
8.
Durant J, Hansen A, Bauer M: Public understanding of the new genetics; in Marteau T, Richards M (eds): The Troubled Helix: Social and Psychological Implications of the New Human Genetics. Cambridge University Press, Cambridge, 1996.
9.
Wynne B: Misunderstood misunderstandings: social identities and public uptake of science; in Irwin A, Wynne B (eds): Misunderstanding Science? The Public Reconstruction of Science and Technology. Cambridge University Press, Cambridge, 1996, pp 19–46.
10.
Miller S: Public understanding of science at the crossroads. Public Understanding Sci 2001;10:315–330.
11.
Hietala M, Hakone A, Ro A, Nimble P, Peltonen L, Aula P: Attitudes towards genetic testing among the general population and relatives of patients with severe genetic disease: a survey from Finland. Am J Hum Genet 1995;566:1493–1500.
12.
Kessler S, Field T, Worth L, Mosbarger H: Attitudes of persons at risk for Huntington’s disease towards predictive testing. Am J Med Genet 1987;26:259–270.
13.
Craufurd D, Dodge A, Kerzain-Storrar L, Harris R: Uptake of presymptomatic predictive testing for Huntington’s disease. Lancet 1989;ii:603–605.
14.
Lambert H, Rose H: Disembodied knowledge? Making sense of medical science; in Irwin A, Wynne B (eds): Misunderstanding Science? The Public Reconstruction of Science and Technology. Cambridge University Press, Cambridge, 1996, pp 65–83.
15.
Parsons E, Atkinson P: Lay constructions of genetic risk. Sociol Health Illn 1992;14:437–55.
16.
Parsons E, Atkinson P: Genetic risk and reproduction. Sociol Rev 1993;41:679–706.
17.
Kerr A, Cunningham-Burley S, Amos A: The new human genetics and health: mobilising lay expertise. Public Understanding Sci 1998a;7:41–60.
18.
Williams G, Popay J: Lay knowledge and the privilege of experience; in Gabe J, Kelleher D, Williams G (eds): Challenging Medicine. London, Routledge, 1994.
19.
Kerr A, Cunningham-Burley S, Amos A: Drawing the line: an analysis of lay people’s discussions about the new human genetics. Public Understanding Sci 1998b;7:113–133.
20.
Kerr A, Cunningham-Burley S: On ambivalence and risk: reflexive modernity and the new human genetics. Sociology 2000;34:283–304.
21.
Irwin A: Constructing the scientific citizen: science and democracy in the biosciences. Public Understanding Sci 2001;10:1–18.
22.
Franklin S: Culturing biology: cell lines for the second millennium. Health 2001;5:335–354.
23.
Kerr A, Cunningham-Burley S, Tutton R: Shifting subject positions: experts and lay people in public dialogue. Soc Stud Sci, in preparation.
24.
Collins H, Evans R: The third wave of science studies: studies of expertise and experience. Soc Stud Sci 2002;32:235–296.
25.
Prior L: Belief, knowledge and expertise: the emergence of the lay expert in medical sociology. Sociol Health Illn 2003:24;41–57.
26.
Giddens A: Modernity and Self-identity: Self and Society in the Late Modern Age. Cambridge, Polity Press, 1991.
27.
Beck U: The Reinvention of Politics: Rethinking Modernity in the Global Social Order. Cambridge, Polity Press, 1997.
28.
Harrison S, Smith C: Trust and moral motivation: redundant resources in health and social care? Policy Polit 2004;32:371–386.
29.
Jones M, Salter B: The governance of human genetics: policy discourse and constructions of public trust. New Genet Soc 2003;22:22–41.
30.
House of Lords Select Committee on Science and Technology: Science and Society, 3rd Report. London, HMSO, 2000.
31.
Lupton D: Your life in their hands: trust in the medical encounter; in James V, Gabe J (eds): Health and the Sociology of Emotions. Oxford, Blackwell, 1996.
32.
Mizstal B: Trust in Modern Societies. Cambridge, Polity Press, 1996, p 6.
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