The new genetics and health: Mobilizing lay expertise

Public Understanding of Science

Volumn 7, Issue 1, 1998, Pages 41-60

  Kerr, Anne ^a   Cunningham Burley, Sarah ^a   Amos, Amanda ^a  

^a UNIVERSITY OF EDINBURGH   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ABORTION; ARTICLE; ATTITUDE TO HEALTH; BEHAVIOR GENETICS; BIOMEDICAL AND BEHAVIORAL RESEARCH; COGNITION; COMPREHENSION; CONSUMER; DISABLED PERSON; EMPIRICAL APPROACH; GENETIC DISORDER; GENETIC SCREENING; GENETICS; GENETICS AND REPRODUCTION; HUMAN; INFORMATION PROCESSING; MEDICAL GENETICS; POLICY; PRENATAL DIAGNOSIS; PROFESSIONAL COMPETENCE; PUBLIC OPINION; QUALITATIVE RESEARCH; RESEARCH; SOCIOECONOMICS; UNITED KINGDOM;

BIOMEDICAL AND BEHAVIORAL RESEARCH; EMPIRICAL APPROACH; GENETICS AND REPRODUCTION;

ABORTION, EUGENIC; COGNITION; COMPREHENSION; CONSUMER PARTICIPATION; DATA COLLECTION; DISABLED PERSONS; EUGENICS; FOCUS GROUPS; GENETIC DISEASES, INBORN; GENETIC RESEARCH; GENETIC SCREENING; GENETICS; GENETICS, BEHAVIORAL; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; PRENATAL DIAGNOSIS; PROFESSIONAL COMPETENCE; PUBLIC OPINION; PUBLIC POLICY; QUALITATIVE RESEARCH; RESEARCH; SCOTLAND; SOCIOECONOMIC FACTORS;

EID: 0031598316     PISSN: 09636625     EISSN: None     Source Type: Journal    
DOI: 10.1177/096366259800700104     Document Type: Article

References (39)

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2. B. Wynne, "Knowledges in Context," Science, Technology and Human Values 19 (1991): 1-17;
3. B. Wynne, "Misunderstood Misunderstanding: Social Identities and Public Uptake of Science," Public Understanding of Science 1 (1992): 281-304;
4. B. Wynne, "The Public Understanding of Science," in Handbook of Science and Technology Studies, ed. S. Jasanoff, G. Markel, J. Petersen, and T. Pinch (London: Sage, 1995), 361-88;
5. A. Irwin and B. Wynne, eds., Misunderstanding Science? The Public Reconstruction of Science and Technology (Cambridge: Cambridge University Press, 1996);
6. B. Wynne, "May the Sheep Safely Graze? A Reflexive View of the Expert-Lay Knowledge Divide," in Risk, Environment and Modernity: Towards a New Ecology of Risk, ed. S. Lash, S. Bronislaw, and B. Wynne (London: Sage, 1996), 45-78.
7. These events took place in March 1997, in London and Edinburgh respectively. The following articles provide discussion of the events: G. Vines, "Beware Superstars Bearing Opinions," New Scientist (May 1997): 54;
8. and G. Vines, "Genetics: Let the Public Decide," British Medical Journal 314 (5 April 1997): 1055.
9. See D. Nelkin and L. Tancredi, Dangerous Diagnostics: The Social Power of Biological Information (New York: Basic Books, 1989);
10. and T. Duster, Backdoor to Eugenics (London: Routledge, 1989).
11. Nuffield Council on Bioethics, Genetic Screening: Ethical Issues (London: Nuffield Council on Bioethics, 1993), 80.
12. P. Harper, "Genetics and Public Health," British Medical Journal 304 (1992): 721.
13. See A. Kerr, S. Cunningham-Burley, A. Amos, "The New Genetics: Professionals' Discursive Boundaries," Sociological Review 45 (1997): 279-303;
14. A. Kerr, S. Cunningham-Burley, A. Amos, "Eugenics and the New Genetics in Britain: Examining Contemporary Professionals' Accounts," Science, Technology & Human Values (forthcoming);
15. U. Beck, Risk Society: Towards a New Modernity (London: Sage, 1992);
16. A. Giddens, Modernity and Self Identity: Self and Society in the Late Modern Age (Oxford: Polity, 1991);
17. B. Wynne, "Frameworks of Rationality."
18. B. Wynne, "Misunderstood Misunderstanding."
19. J. Turney, "The Public Understanding of Genetics - Where Next?" European Journal Genetics Society 1 (1995): 5-20.
20. See T. Marteau and M. Richards, eds, The Troubled Helix: Social and Psychological Implications of the New Human Genetics (Cambridge: Cambridge University Press, 1996);
21. M. Richards and M. Ponder, "Lay Understanding of Genetics: A Test of a Hypothesis," Journal of Medical Genetics 33 (1996): 1032-36.
22. E. Parsons and P. Atkinson, "Lay Constructions of Genetic Risk," Sociology of Health and Illness 14 (1992): 439-55.
23. H. Lambert and H. Rose, "Disembodied Knowledge? Making Sense of Medical Knowledge," in Irwin and Wynne, eds, Misunderstood Science?
24. A. Schutz, "The Well-informed Citizen: An Essay on the Social Distribution of Knowledge," Social Research 13 (1946): 463-78.
25. Lambert and Rose, "Disembodied Science," 80.
26. S. Macintyre, "The Public Understanding of Science or the Scientific Understanding of the Public? A Review of the Social Context of the 'New Genetics.'" Public Understanding of Science 4 (1995): 223-32.
27. Wynne, "The Public Understanding of Science."
28. M. Michael, "Lay Discourses of Science: Science-in-General, Science-in-Particular and Self," Science, Technology and Human Values 17 (1992): 313-33.
29. A. Schutz, Reflections on the Problem of Relevance (New Haven & London: Yale University Press, 1970). Note that although we do not draw explicitly on Schutz's analysis of relevancy his work has informed our approach, particularly his stress on the importance of topical and motivational relevance.
30. Wynne, "Misunderstood Misunderstanding."
31. See for example E. Parsons and P. Atkinson, "Lay Constructions of Genetic Risk," Sociology of Health and Illness 14 (1992): 439-55.
32. See for example Wynne, "Misunderstood Misunderstanding";
33. B. Wynne, "Knowledges in Context," Science, Technology and Human Values 19 (1991): 1-17;
34. M. Michael, "Lay Discourses of Science."
35. This is what has been highlighted as the social context by authors such as S. Macintyre, "Public Understanding";
36. C. Davison, S. Macintyre, and G. Davey Smith, "The Potential Social Impact of Predictive Testing for Susceptibility to Common Chronic Diseases - A Review and Research Agenda," Sociology of Health and Illness 16 (1994): 340-71. Existing social theories and practice form part of the cultural backdrop with which the new genetics will necessarily engage.
37. M. Michael, "Lay Discourses of Science."
38. Wynne, "Misunderstood Misunderstanding." People may have to act "as if they trust institutions and experts, although this may not reflect absolute acceptance of such expertise. In other contexts people may display ambivalence and skepticism.
39. A. Johnson, "'It's Good to Talk": The Focus Group and the Sociological Imagination," Sociological Review 44 (1996): 517-38.