Boundary setting in breast cancer research: A study of the experience of women volunteer research subjects

Sociology of Health and Illness

Volumn 32, Issue 1, 2010, Pages 74-88

  Armstrong, Victoria ^a   Morris, Norma ^b  

^a ST MARY'S UNIVERSITY   (United Kingdom)

^b UNIVERSITY COLLEGE LONDON   (United Kingdom)

Author keywords

Breast cancer; Clinical research; Health technology; Human subjects; Volunteers

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AGED; ARTICLE; BREAST TUMOR; ETHICS; FEMALE; HUMAN; HUMAN EXPERIMENT; INFORMED CONSENT; INSTRUMENTATION; INTERVIEW; MAMMOGRAPHY; MEDICAL RESEARCH; MENTAL STRESS; METHODOLOGY; MIDDLE AGED; OPTICAL TOMOGRAPHY; PAIN; PATIENT PARTICIPATION; QUALITATIVE RESEARCH; RESEARCH ETHICS; RESEARCH SUBJECT; SAFETY; STANDARD; UNITED KINGDOM;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; BIOMEDICAL RESEARCH; BREAST NEOPLASMS; ETHICS, RESEARCH; FEMALE; GREAT BRITAIN; HUMAN EXPERIMENTATION; HUMANS; INFORMED CONSENT; INTERVIEWS AS TOPIC; MAMMOGRAPHY; MIDDLE AGED; PAIN; PATIENT PARTICIPATION; QUALITATIVE RESEARCH; RESEARCH SUBJECTS; SAFETY; STRESS, PSYCHOLOGICAL; TOMOGRAPHY, OPTICAL; YOUNG ADULT;

EID: 77955876051     PISSN: 01419889     EISSN: 14679566     Source Type: Journal    
DOI: 10.1111/j.1467-9566.2009.01182.x     Document Type: Article

References (45)

1. Appelbaum, P.S., Roth, L.H., Lidz, C.W., Benson, P. and Winslade, W. (1987) False hopes and best data - consent to research and the therapeutic misconception, Hastings Center Report, 17, 2, 20-4.
2. Andrews, F.J. (2001) Pain during mammography: implications for breast screening programmes, Australasian Radiology, 45, 113-7.
3. Borrayo, E.A. and Jenkins, S.R. (2001) Feeling indecent: breast cancer screening resistance of Mexican-descent women, Journal of Health Psychology, 6, 5, 537-49.
4. British Psychological Society (2000). Code of Conduct, Ethical Principles and Guidelines. Leicester: British Psychological Society.
5. Burman, E. and Parker, I. (1993) Introduction-discourse analysis: The turn to text. In Burman, E. and Parker, I. (eds) Discourse Analytic Research: Repertoires and Readings of Texts in Action. London: Routledge.
6. Bruyninckx, E., Mortelmans, D., Van Goethem, M. and Van Hove, E. (1999) Risk factors of pain in mammographic screening, Social Science and Medicine, 49, 933-41.
7. Corrigan, O. (2002) 'First in man': the politics and ethics of women in clinical drug trials, Feminist Review, 72, 40-52.
8. Corrigan, O. (2003) Empty ethics: the problem with informed consent, Sociology of Health and Illness, 25, 3, 768-92.
9. Cox, K. (1999) Researching research: patients' experiences of participation in phase I and II anticancer drug trials, European Journal of Oncology Nursing, 3, 3, 143-52.
10. DoH/ Department of Health (2001) Research Governance Framework for Health and Social Care. London: Department of Health.
11. Doyle, C.A. and Stanton, M.T. (2002) Significant factors in patient satisfaction ratings of screening mammography, Radiography, 8, 159-72.
12. Edwards, S.J.L., Lilford, R.J. and Hewison, J. (1998) The ethics of randomised controlled trials from the perspectives of patients, the public and healthcare professionals, British Medical Journal, 317, 7167, 1209-12.
13. Entwistle, V.A., Renfrew, M.J., Yearley, S., Forrester, J. and Lamont, T. (1998) Lay perspectives: advantages for health research, British Medical Journal, 316, 7129, 463-6.
14. Epstein, S. (1996) Impure Science: AIDS, Activism and the Politics of Knowledge. Berkeley: University of California Press.
15. Epstein, S. (2004) Bodily differences and collective identities: the politics of gender and race in biomedical research in the United States, Body and Society, 10, 203, 183-203.
16. Fallowfield, L.J., Rodway, A. and Baum, M. (1990) What are the psychological factors influencing attendance, non-attendance and re-attendance at a breast screening centre? Journal of the Royal Society of Medicine, 83, 547-51.
17. Gill, R. (2000) Discourse analysis. In Bauer, M. and Gaskell, G. (eds) Qualitative Researching with Text, Image and Sound. London: Sage.
18. Goodare, H. and Lockwood, S. (1999) Involving patients in clinical research, British Medical Journal, 319, 724-5.
19. Grosz, E. (1994) Volatile Bodies: Towards a Corporeal Feminism. Bloomington: Indiana University Press.
20. Hafslund, B. (2000) Mammography and the experience of pain and anxiety, Radiography, 6, 269- 72.
21. Hanley, B., Truesdale, A., King, A., Elbourne, D. and Chalmers, I. (2001) Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey, British Medical Journal, 322, 7285, 519-23.
22. Howson, A. (1999) Cervical screening, compliance and moral obligation, Sociology of Health and Illness, 21, 4, 401-25.
23. Iredale, R., Brain, K., Williams, B., France, E. and Gray, J. (2006) The experience of men with breast cancer in the United Kingdom, European Journal of Cancer, 42, 3, 334-41.
24. Klawiter, M. (2008) The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism. Minneapolis and London: University of Minnesota Press.
25. Lowton, K. (2005) Trials and Tribulations: understanding motivations for clinical research participants amongst adults with cystic fibrosis, Social Science and Medicine, 61, 1854-65.
26. Merleau-Ponty, M. (1962) Phenomenology of Perception. London: Routledge and Kegan-Paul.
27. Miles, A. (1991) Women, health, and medicine. Buckingham: Open University Press.
28. Miller, D., Livingstone, V. and Herbison, P. (2008) Interventions for relieving the pain and discomfort of screening mammography (Review), Cochrane Database of Systematic Reviews, Issue 1, Article no: CD002942.
29. Morris, N. and Balmer, B. (2006) Volunteer human subjects' understanding of their participation in a biomedical research experiment, Social Science and Medicine, 62, 4, 998-1008.
30. Morris, N. and Schneider, M. (in press) Volunteer research subjects' experience of participation in research on a novel diagnostic technology for breast cancer, Qualitative Health Research.
31. Perkins, G.H. and Middleton, L.P. (2003) Breast cancer in men, British Medical Journal, 327, 7409, 239-40.
32. Potts, L.K. (2000) Ideology of Breast Cancer: Feminist Perspectives. London: Macmillan Press Ltd.
33. Potter, J. (1996) Representing Reality: Discourse, Rhetoric and Social Construction. London: Sage
34. Saywell, C., With Beattie, L. and Henderson, L. (2000) Sexualised illness: the newsworthy body in media representations of breast cancer. In Potts, L.K. (ed.) Ideologies of Breast Cancer: Feminist Perspectives. London: Macmillan Press Ltd.
35. Shildrick, M. and Mykitiuk, R. (2005) Ethics of the Body: Postconventional Challenges. Cambridge, MA: MIT Press.
36. Shuhatovich, O.M., Sharman, M.P., Mirabal, Y.N., Earle, N.R., Follen, M. and Basen-Engquist, K. (2005) Participant recruitment and motivation for participation in optical technology for cervical cancer screening research trials, Gynecologic Oncology, 99, S226-S231.
37. Snowdon, C., Garcia, J. and Elbourne, D. (1997) Making sense of randomization; responses of parents of critically ill babies to random allocation of treatment in a clinical trial, Social Science and Medicine, 45, 9, 1337-55.
38. Sontag, S. (1978 / 1990) Illness as Metaphor and AIDS and its Metaphors. New York: Doubleday.
39. Stacey, J. (1997) Teratologies: a Cultural Study of Cancer. London and New York: Routledge
40. Weinstein, M. (2001) A public culture for guinea pigs: US human research subjects after the Tuskegee study, Science as Culture, 10, 2, 195-223.
41. Wilkinson, S. (2000) Feminist research traditions in health psychology: breast cancer research, Journal of Health Psychology, 5, 3, 359-72.
42. Williams, S. (2002) Corporeal reflections on the biological: reductionism, constructionism and beyond. In Bendelow, G., Carpenter, M., Vautier, C. and Williams, S. (eds) Gender, Health and Healing: The Public / Private Divide. London and New York: Routledge.
43. Williams, B.G., Iredale, R., Brain, K., France, E., Barrett-Lee, P. and Gray, J. (2003) Experiences of men with breast cancer: an exploratory focus group study, British Journal of Cancer, 89, 10, 1834-6.
44. Williamson, C. (2001) What does involving consumers in research mean? QJM, 94, 12, 661-4.
45. Willis, K. (2004) Personal choice / social responsibility: women aged 40-49 years and mammography screening, Journal of Sociology, 40, 2, 121-36.