Beyond "misunderstanding": Written information and decisions about taking part in a genetic epidemiology study

Social Science and Medicine

Volumn 65, Issue 11, 2007, Pages 2212-2222

  Dixon Woods, Mary ^a   Ashcroft, Richard E ^b   Jackson, Clare J ^a   Tobin, Martin D ^a   Kivits, Joelle ^a   Burton, Paul R ^a   Samani, Nilesh J ^a  

^a UNIVERSITY OF LEICESTER   (United Kingdom)

^b QUEEN MARY UNIVERSITY OF LONDON   (United Kingdom)

Author keywords

Bioethics; Genetic epidemiology; Qualitative study; Research participation; UK; Written information

Indexed keywords

COMPARATIVE STUDY; DECISION MAKING; EPIDEMIOLOGY; ETHICS; GENETICS; QUALITATIVE ANALYSIS;

ADULT; ARTICLE; CLINICAL ARTICLE; COMPARATIVE STUDY; DATA ANALYSIS; DNA DETERMINATION; FEMALE; GENETIC EPIDEMIOLOGY; HUMAN; INFORMED CONSENT; MALE; MEDICAL DECISION MAKING; MEDICAL ETHICS; MEDICAL RESEARCH; MORALITY; PATIENT PARTICIPATION; QUALITATIVE RESEARCH; SEMI STRUCTURED INTERVIEW; UNITED KINGDOM;

ADULT; ATTITUDE TO HEALTH; BLOOD PRESSURE; CONFIDENTIALITY; DECISION MAKING; EPIDEMIOLOGY, MOLECULAR; FEMALE; GREAT BRITAIN; HUMANS; INFORMED CONSENT; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; PAMPHLETS; QUALITATIVE RESEARCH; RESEARCH SUBJECTS; RESEARCHER-SUBJECT RELATIONS; SOCIOLOGY, MEDICAL;

ENGLAND; EURASIA; EUROPE; LEICESTERSHIRE; UNITED KINGDOM; WESTERN EUROPE;

EID: 36048933619     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.socscimed.2007.08.010     Document Type: Article

References (41)

1. Appelbaum P.S., Roth L.H., Lidz C.W., Benson P., and Windsdale W. False hopes and best data: Consent to research and the therapeutic misconception. Hastings Center Report 17 (1987) 20-24
2. Ashcroft R.E. Ethical aspects of experiments. In: Smelser N.J., and Baltes P.B. (Eds). International encyclopedia of social and behavioural sciences (2001), Pergamon, Oxford 9512-9515
3. Ashcroft R.E. The ethics and governance of medical research: What does regulation have to do with morality?. New Review of Bioethics 1 (2003) 41-58
4. Ashcroft R.E. The public interest. Cambridge Quarterly of Healthcare Ethics 13 (2004) 20-27
5. Ashcroft R.E., Jones S., and Campbell A.V. Solidarity in the UK welfare state reforms. Health Care Analysis 8 (2000) 377-394
6. Bauer M.W., Allum N., and Miller S. What can we learn from 25 years of PUS survey research? Liberating and expanding the agenda. Public Understanding of Science 16 (2007) 79-95
7. Blaxter M. The causes of disease: Women talking. Social Science & Medicine 17 (1983) 59-69
8. Bloor D. Wittgenstein, rules and institutions (2002), Routledge, London
9. Calnan M. Health and illness: The lay perspective (1987), Tavistock, London
10. Chalmers I., and Lindley R.I. Double standards on informed consent to treatment. In: Doyal L., and Tobias J.S. (Eds). Informed consent in medical research (2001), BMJ Books, London 266-275
11. Davison C., Davey Smith G., and Frankel S. Lay epidemiology and the prevention paradox: The implications of coronary candidacy for health education. Sociology of Health and Illness 13 (1991) 1-19
12. Derrida J. Of grammatology (1977), Johns Hopkins University Press, Baltimore
13. Dixon-Woods M. Writing wrongs? An analysis of published discourses about the use of patient information leaflets. Social Science & Medicine 52 (2001) 1417-1432
14. Dworkin G. The theory and practice of autonomy (1988), Cambridge University Press, Cambridge
15. Featherstone K., and Donovan J.L. "Why don't they just tell me straight, why allocate it?" The struggle to make sense of participating in a randomised controlled trial. Social Science & Medicine 55 (2002) 709-719
16. Frank A. The wounded story teller: Body, illness and ethics (1997), University of Chicago Press, Chicago
17. Fried E. The therapeutic misconception, beneficence, and respect. Accountability in Research 8 (2001) 331-348
18. Giddens A. The consequences of modernity (1990), Polity, Cambridge
19. Giddens A. Modernity and self identity (1991), Polity, Cambridge
20. Glaser B., and Strauss A. The discovery of grounded theory (1967), Aldine, Chicago
21. Kent G. The views of members of Local Research Ethics Committees, researchers and members of the public towards the roles and functions of LRECs. Journal of Medical Ethics 23 (1997) 186-190
22. Lidz C.W., Appelbaum P.S., Grisso T., and Renaud M. Therapeutic misconception and the appreciation of risks in clinical trials. Social Science & Medicine 58 (2004) 1689-1697
23. Macklin R. Understanding informed consent. Acta Oncologica 38 (1999) 83-87
24. McNeill P., and Pfeffer N. Learning from unethical research. In: Doyal L., and Tobias J.S. (Eds). Informed consent in medical research (2001), BMJ Books, London 49-60
25. Misztal B.A. Trust in modern societies (1996), Polity, Cambridge
26. Moreno J.D. Abandon all hope: The therapeutic misconception and informed consent. Cancer Investigation 21 (2003) 481-482
27. Morris N., and Balmer B. Volunteer human subjects' understanding of their participation in a biomedical research experiment. Social Science & Medicine 62 (2006) 998-1008
28. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. Reprinted. In: Jonsen A.R., Veatch R.M., and Walters L. (Eds). Source book in bioethics: A documentary history (1979), Georgetown University Press, Washington, DC 22-28 1998
29. O'Neill O. Autonomy and trust in bioethics (2002), Cambridge University Press, Cambridge
30. Pearson P.D. The comprehension revolution: A twenty-year history of process related to reading comprehension. In: Mayor B.M., and Pugh A.K. (Eds). Language, communication and education (1987), Croom Helm, London
31. Prior L. Using documents in social research (2003), Sage, London
32. Prior L. Belief, knowledge and expertise: The emergence of the lay expert in medical sociology. Sociology of Health and Illness 25 (2003) 41-57
33. Snowdon C., Garcia J., and Elbourne D. Making sense of randomization; responses of parents of critically ill babies to random allocation of treatment in a clinical trial. Social Science & Medicine 45 (1997) 1337-1355
34. Stacey M. The power of lay knowledge: A personal view. In: Popay J., and Williams G. (Eds). Researching the people's health (1994), Routledge, London
35. Stainton Rogers W. Explaining health and illness: An exploration of diversity (1991), Harvester Wheatsheaf, Hemel Hempstead
36. Stimson G.V. Obeying the doctor's orders: A view from the other side. Social Science & Medicine 8 (1974) 97-104
37. Thompson J.B. Social theory and the media. In: Crowley D., and Mitchell D. (Eds). Communication theory today (1994), Polity Press, London
38. Tuckett D., Boulton M., Olson C., and Williams A. Meetings between experts: An approach to sharing ideas in medical consultations (1985), Tavistock, London
39. Weiss M., and Britten N. What is concordance?. Pharmaceutical Journal 271 (2003) 493
40. Wiles, R., Crow, G., Heath, S., & Charles, V. (2005). Research ethics and regulation in the UK: The case of informed consent. Paper presented at the 1st International Congress of Qualitative Inquiry. University of Illinois at Urbana-Champaign.
41. Williams G., and Popay J. Lay knowledge and the privilege of experience. In: Gabe J., Kelleher D., and Williams G. (Eds). Challenging medicine (1994), Routledge, London 118-139