Clinical,Technical,and Social Contingencies and the Decisions of Adults with HIV/AIDS to Enroll in Clinical Trials

Abstract

In this article, the author draws on interview data collected during an ethnographic field study of the informed consent process and HIV/AIDS clinical trial work. She held interviews to explore how individuals decide to enroll in a clinical trial and uses the concept of contingency to illustrate how individuals interpret and act on the uncertainties of clinical research. Findings show that people with HIV/AIDS consider three kinds of contingencies— clinical, social, and technical—before enrolling in a clinical trial. The author offers suggestions for how the concept of contingency might be used in future studies on informed consent and for how the concept might be used in discussions between research professionals and patients on human subject research.

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References

Appelbaum, P. S., Roth, L. H., & Lidz, C. W. (1982). The therapeutic misconception: Informed consent in psychiatric research. International Journal of Law and Psychiatry, 5, 319-329.

Bayer, R. (1995). AIDS, ethics, and activism: Institutional encounters in the epidemic’s first decade. In R. E. Bulger, E. M. Bobby,& H. V. Fineberg (Eds.), Society’s choices: Social and ethical decision making in biomedicine (pp. 458-476). Washington, DC: National Academy Press.

Broome, M. E., Richards, D. J.,& Hall, J. M. (2001). Children in research: The experience of ill children and adolescents. Journal of Family Nursing, 7, 32-49.

Cassileth, B. R., Lusk, E. J., Miller, D. S., & Hurwitz, S. (1982). Attitudes towards clinical trials among patients and the public. Journal of American Medical Association, 248(8), 968-970.

Cox, K. (2002). Informed consent and decision-making: Patients’ experiences of the process of recruitment to phases I and II anti-cancer drug trials. Patient Education and Counseling, 46, 31-38.

Dickert, N., & Grady, C. (1999). What’s the price of a research subject? Approaches to payment for research participation. New England Journal of Medicine, 341, 198-203.

Edgar, H.,& Rothman, D. J. (1990). Newrules for newdrugs: The challenge of AIDS to the regulatory process. Milbank Quarterly, 68(Suppl. 1), 111-142.

Epstein, S. (1997). Impure science: AIDS, activism and the politics of knowledge. Berkeley: University of California Press.

Feenberg, A. (1992). On being a human subject: Interest and obligation in the experimental treatment of incurable disease. Philosophical Forum, 23(3), 213-230.

10.

Fox, R. C. (1959). Experiment perilous: Physicians and patients facing the unknown. Glencoe, IL: Free Press.

11.

Grady, C. (2001). Money for research participation: Does it jeopardize informed consent? American Journal of Bioethics, 1, 40-44.

12.

Kass, N. E., Sugarman, J., Faden, R.,& Schoch-Spana, M. (1996). Trust: The fragile foundation of contemporary biomedical research. Hastings Center Report, 26(5), 25-29.

13.

Marks, H. M. (1997). The progress of experiment: Science and therapeutic reform in the United States, 1900-1990. Cambridge, UK: Cambridge University Press.

14.

Moore, S. (2001). Aneed to try everything: Patient participation in phase I trials. Journal of Advanced Nursing, 33(6), 738-747.

15.

Schutta, K. M.,& Burnett, C. B. (2000). Factors that influence a patient’s decision to participate on a phase I cancer clinical trial. Oncology Nursing Forum, 27(9), 1435-1438.

16.

Siminoff, L. A. (2001). Money and the research subject: A commentary on Grady. American Journal of Bioethics, 1, 65-66.

17.

Strauss, A. L. (1987). Qualitative analysis for social scientists. Cambridge, UK: Cambridge University Press.

18.

Strauss, A., & Corbin, J. (1998). Basics of qualitative research(1st ed.). Thousand Oaks, CA: Sage.

19.

Strauss, A., Fagerhaugh, S., Suczek, B., & Wiener, C. (1985). Social organization of medical work. Chicago: University of Chicago Press.