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Research, Therapy, and Bioethical Hegemony: The Controversy over Perinatal AZT Trials in Africa

Published online by Cambridge University Press:  18 October 2013

Claire L. Wendland
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Abstract:

Research on zidovudine (AZT) for pregnant women in Africa sparked worldwide debate in the late 1990s. The debate ultimately led to the rewriting of international ethics guidelines, in at least one case specifically to prohibit use of a placebo group (the most controversial aspect of the research) when known effective treatment is available. I draw upon clinical experience in Malawi and theoretical perspectives from anthropology to reframe the controversy. The dominant bioethical position constructed research and therapy as ethically distinct. This distinction ensured that inequalities of power and resources were perpetuated, not remedied, by the AZT debates.

Type
Research Article
Information
African Studies Review , Volume 51 , Issue 3 , December 2008 , pp. 1 - 23
Copyright
Copyright © African Studies Association 2008

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References

Abdool Karim, Salim S. 1998. “Placebo Controls in HIV Perinatal Transmission Trials: A South African's Viewpoint.” American Journal of Public Health 88 (4): 564–66.CrossRefGoogle ScholarPubMed
Angell, Marcia. 1997. “The Ethics of Clinical Research in the Third World.” New England Journal of Medicine 337: 847–49.CrossRefGoogle ScholarPubMed
Annas, George, and Grodin, Michael. 1998. “Human Rights and Maternal-Fetal HIV Transmission Prevention Trials in Africa.” American Journal of Public Health 88 (4): 560–63.CrossRefGoogle ScholarPubMed
Anya, Ike. 2008. “Ethical Issues in Health-Care Practice and Research in Sub-Saharan Africa.” In Health Knowledge and Belief Systems in Africa, edited by Falola, Toyin and Heaton, Matthew, 205–11. Durham, N.C.: Carolina Academic Press.Google Scholar
Bagenda, Danstan, and Musoke-Mudido, Philippa. 1997. “We're Trying to Help Our Sickest People, Not Exploit Them.” Washington Post, September 28.Google Scholar
Bandawe, Chiwoza R. 2005. “Psychology Brewed in an African Pot: Indigenous Philosophies and the Quest for Relevance.” Higher Education Policy 18: 289–300.CrossRefGoogle Scholar
Bayer, Ronald. 1998. “The Debate over Maternal-Fetal HIV Transmission Prevention Trials in Africa, Asia and the Caribbean: Racist Exploitation or Exploitation of Racism?” American Journal of Public Healths?, (4): 567–70.CrossRefGoogle Scholar
Beauchamp, Tom L., and Childress, James F.. 2008. Principles of Biomedical Ethics. 6th edition. New York: Oxford University Press.Google Scholar
Beecher, Henry. 1966. “Ethics and Clinical Research.” New England Journal of Medicine 274: 1354–60.CrossRefGoogle ScholarPubMed
Benatar, Solomon R. 1998. “Global Disparities in Health and Human Rights: A Critical Commentary.” American Journal of Public Health 88 (2): 295–300.CrossRefGoogle ScholarPubMed
Buchanan, David R. 2008. “Autonomy, Paternalism, and Justice: Ethical Priorities in Public Health.” American Journal of Public Health 98 (1): 15–21.CrossRefGoogle ScholarPubMed
Cambrosio, Alberto, et al. 2006. “Regulatory Objectivity and the Generation and Management of Evidence in Medicine.” Social Science and Medicine 63: 189–99.CrossRefGoogle ScholarPubMed
Carlson, Robert V., Boyd, Kenneth M., and Webb, David J.. 2004. “The Revision of the Declaration of Helsinki: Past, Present and Future.” British Journal of Clinical Pharmacology 57 (6): 695–713.CrossRefGoogle ScholarPubMed
Chin, James. 1990. “Global Estimates of AIDS and HIV Infections: 1990.” AIDS 4 (Supplement 1): S277–83.CrossRefGoogle ScholarPubMed
CIOMS (Council for International Organizations of Medical Sciences). 2002. International Ethical Guidelines for Biomedical Research Involving Human Subjects. Prepared by the Council for International Organizations of Medical Sciences (CIOMS) in Collaboration With the World Health Organization (WHO). Geneva: CIOMS.Google Scholar
Cohen, Mike. 2000. “AIDS Drug Controversial in S. Africa.” Associated Press, April 7.Google Scholar
Connor, Edward, and Sperling, Rhoda. 1994. “Reduction of Maternal-Infant Transmission of Human Immunodeficiency Virus Type 1 With Zidovudine Treatment.” New England Journal of Medicine 331: 1173–80.CrossRefGoogle ScholarPubMed
Coovadia, H. M., et al. 2007. “Mother-to-Child Transmission of HIV-1 Infection during Exclusive Breastfeeding in the First Six Months of Life: An Intervention Cohort Study.” Lancet 369 (9567): 1107–16.CrossRefGoogle Scholar
DeVries, Raymond, et al. 2007. The View From Here: Bioethics and the Social Sciences. Oxford: Blackwell Publishing.Google Scholar
Economist Intelligence Unit. 1994. Country Profile: Tanzania, Comoros. London: The Unit.Google Scholar
Epstein, Steven. 1996. Impure Science: AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press.Google ScholarPubMed
Ferriman, Annabel. 2001. “World Medical Association Clarifies Rules on Placebo Controlled Trials.” BMJ: The British Medical Journal 323 (7317): 825.CrossRefGoogle ScholarPubMed
Fost, Norman. 1998. “Ethical Dilemmas in Medical Innovation and Research: Distinguishing Experimentation from Practice.” Seminars in Perinatology 22 (3): 223–32.CrossRefGoogle ScholarPubMed
Fox, Renée C. 1990. “The Evolution of American Bioethics.” In Social Science Perspectives on Medical Ethics, edited by Weisz, George, 201–17. Dordrecht: Kluwer Academic Press.CrossRefGoogle Scholar
Fox, Renée C., and Swazey, Judith P.. 1984. “Medical Morality Is Not Bioethics: Medical Ethics in China and the United States.” Perspectives in Biology and Medicine 27: 336–40.CrossRefGoogle ScholarPubMed
French, Howard. 1997. “AIDS Research in Africa: Juggling Risks and Hopes.” New York Times, October 9.Google Scholar
Gambia Government/Medical Research Council Joint Ethical Committee. 1998. “Ethical Issues Facing Medical Research in Developing Countries.” Lancet 351 (9098): 286–87.CrossRefGoogle Scholar
Gathii, James T. 2005. “Third World Perspectives on Global Pharmaceutical Access.” In Ethics and the Pharmaceutical Industry, edited by Santoro, Michael A. and Gorrie, Thomas M., 336–51. New York: Cambridge University Press.CrossRefGoogle Scholar
Geissler, P. W., et al. 2008. “‘He Is Now Like a Brother, I Can Even Give Him Some Blood’: Relational Ethics and Material Exchanges in a Malaria Vaccine ‘Trial Community’ in The Gambia.” Social Science and Medicine 67 (5): 696–707.CrossRefGoogle Scholar
Gisselquist, David, et al. 2003. “Let It Be Sexual: How Health Care Transmission of AIDS in Africa Was Ignored.” International Journal of STD and AIDS 14: 148–61.CrossRefGoogle ScholarPubMed
Iliffe, John. 2006. The African AIDS Epidemic: A History. Oxford: James Currey.Google Scholar
International Perinatal HIV Group. 1999. “The Mode of Delivery and the Risk of Vertical Transmission of Human Immunodeficiency Virus Type 1: A Meta-Analysis of 15 Prospective Cohort Studies.” New England Journal of Medicine 340: 977–87.CrossRefGoogle Scholar
Jecker, Nancy S., Jonsen, Albert R., and Pearlman, Robert A.. 2007. Bioethics: An Introduction to the History, Methods, and Practice. 2nd edition. Sudbury, Mass.: Jones and Bartlett Publishers.Google Scholar
Kim, Roy. 1998. “Ethics of Placebo-Controlled Trials of Zidovudine to Prevent the Perinatal Transmission of HIV in the Third World.” New England Journal of Medicine 338 (12): 837.Google ScholarPubMed
Kleinman, Arthur. 1995. Writing at the Margin: Discourse Between Anthropology and Medicine. Berkeley: University of California Press.Google Scholar
Kunstadter, Peter. 1980. “Medical Ethics in Cross-cultural and Multi-cultural Perspective.” Social Science and Medicine 14(b): 289–96.Google Scholar
Levine, Carol. 1996. “Changing Views of Justice after Belmont: AIDS and the Inclusion of Vulnerable Subjects.” In The Ethics of Research Involving Human Subjects: Facing the 21st Century, edited by Vanderpool, Harold Y., 105–26. Frederick, Md.: University Publishing Group.Google Scholar
Levine, Robert. 1998. “The ‘Best Proven Therapeutic Method’ Standard in Clinical Trials in Technologically Developing Countries.” IRB: A Review of Human Subjects Research 20 (1): 6.CrossRefGoogle ScholarPubMed
Louis, J., Landon, M. B., and Gersnoviez, R. J.. 2007. “Perioperative Morbidity and Mortality among Human Immunodeficiency Virus-Infected Women Undergoing Cesarean Delivery.” Obstetrics and Gynecology 110 (2): 385–90.CrossRefGoogle ScholarPubMed
Lurie, P., Hintzen, P., and Lowe, R. A.. 1995. “Socioeconomic Obstacles to HIV Prevention and Treatment in Developing Countries: The Roles of the International Monetary Fund and the World Bank.” AIDS9 (6): 539–46.Google Scholar
Lurie, Peter, and Wolfe, Sidney. 1997. “Unethical Trials of Interventions to Reduce Perinatal Transmission of the Human Immunodeficiency Virus in Developing Countries.” New England Journal of Medicine 337: 853–56.CrossRefGoogle ScholarPubMed
Macklin, Ruth. 1999. Against Relativism: Cultural Diversity and the Search for Ethical Universale in Medicine. Oxford: Oxford University Press.CrossRefGoogle Scholar
Mann, Jonathan M. 1997. “Medicine and Public Health, Ethics and Human Rights.” Hastings Center Report 27 (3): 6–13.CrossRefGoogle Scholar
Mariner, W. K. 1993. “Distinguishing ‘Exploitable’ From ‘Vulnerable’ Populations: When Consent Is Not the Issue.” In Ethics and Research on Human Subjects: International Guidelines, edited by Bankowski, Zenon and Levine, R. J., 44–55. Geneva: CIOMS.Google Scholar
Markman, Maurie. 1992. “Ethical Difficulties with Randomized Clinical Trials Involving Cancer Patients: Examples from the Field of Gynecologic Oncology.” Journal of Clinical Ethics 3 (3): 193–95.CrossRefGoogle ScholarPubMed
Marshall, Patricia. 1992. “Anthropology and Bioethics.” Medical Anthropology Quarterly 6 (1): 49–73.CrossRefGoogle ScholarPubMed
Mbidde, Edward K. 1998. “Ethics of Placebo-Controlled Trials of Zidovudine to Prevent the Perinatal Transmission of HFV in the Third World.” New England Journal of Medicine 338 (12): 837.Google Scholar
Morbidity and Mortality Weekly Report. 1982. “Unexplained Immunodeficiency and Opportunistic Infections in Infants: New York, New Jersey, California.” Morbidity and Mortality Weekly Report 31 (49): 665–67.Google Scholar
Muller, Jessica. 1994. “Anthropology, Bioethics, and Medicine: A Provocative Trilogy.” Medical Anthropology Quarterly?, (4): 448–67.Google Scholar
Nagel, Thomas. 1986. The View From Nowhere. New York: Oxford University Press.Google Scholar
Pecoul, Bernard, et al. 1999. “Access to Essential Drugs in Poor Countries: A Lost Battle?” JAMA: Journal of the American Medical Association 281: 361–67.CrossRefGoogle ScholarPubMed
Resnik, David. 1998. “The Ethics of HIV Research in Developing Nations.” Bioelhics 12 (4): 286–306.CrossRefGoogle ScholarPubMed
Rothman, David. 1991. Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making. New York: Aldine.Google Scholar
Schoepf, Brooke G., Schoepf, Claude, and Millen, Joyce V.. 2000. “Theoretical Therapies, Remote Remedies: SAPs and the Political Ecology of Poverty and Health in Africa.” In Dying for Growth: Global Inequality and the Health of the Poor, edited by Kim, Jim Y. et al., 90–126. Monroe, Me.: Common Courage Press.Google Scholar
Schüklenk, Udo. 1998. “Unethical Perinatal HIV Transmission Trials Establish Bad Precedent.” Bioethics 12 (4): 312–19.CrossRefGoogle ScholarPubMed
Serwadda, D., et al. 1985. “Slim Disease: A New Disease in Uganda and Its Association With HTLV-III Infection.” Lancet 2 (8460): 849–52.CrossRefGoogle ScholarPubMed
Specter, Michael. 1998. “Uganda AIDS Vaccine Test: Urgency Affects Ethics Rules.” New York Times, October 1.Google Scholar
Specter, Michael. 2003. “The Vaccine: Has the Race to Save Africa from AIDS Put Western Science at Odds With Western Ethics?” The New Yorker (February 3), pp. 54–65.Google Scholar
Stolberg, Sheryl G. 1997. “U.S. AIDS Research Abroad Sets Off Outcry over Ethics.” New York Times, September 18.Google Scholar
Tafesse, Eskinder, and Murphy, Timothy. 1998. “Ethics of Placebo-Controlled Trials of Zidovudine to Prevent the Perinatal Transmission of HIV in the Third World.” New England Journal of Medicine 338 (12): 838.Google ScholarPubMed
Turshen, Meredeth. 1999. Privatizing Health Services in Africa. New Brunswick, N.J.: Rutgers University Press.Google Scholar
UNAIDS (United Nations/WHO Joint Taskforce on HIV/AIDS). 2003. Report on the Global HIV/AIDS Epidemic 2002. Geneva: UNAIDS.Google Scholar
Varmus, Harold, and Satcher, David. 1997. “Ethical Complexities of Conducting Research in Developing Countries.” New England Journal of Medicine 337: 1000–1005.CrossRefGoogle ScholarPubMed
Volmink, J., et al. 2007. “Antiretrovirals for Reducing the Risk of Mother-to-Child Transmission of HIV Infection.” Cochrane Database of Systematic Reviews (1): CD003510.Google Scholar
Weijer, Charles, and Anderson, James A.. 2001. “The Ethics Wars: Disputes over International Research.” Hastings Center Report 31 (3): 18–20.CrossRefGoogle ScholarPubMed
Weisz, George, ed. 1990. Social Science Perspectives on Medical Ethics. Dordrecht: Kluwer Academic Publishers.CrossRefGoogle Scholar
Wiktor, Stefan, Ekpini, Ehounou, and Karon, John. 1999. “Short-Course Oral Zidovudine for Prevention of Mother-to-Child Transmission of HIV-1 in Abidjan, Cote D'Ivoire: A Randomised Trial.” Lancet 353 (9155): 781–85.CrossRefGoogle ScholarPubMed
Wolpe, Paul R. 1998. “The Triumph of Autonomy in American Bioethics: A Sociological View.” In Bioethics and Society: Constructing the Ethical Enterprise, edited by DeVries, Raymond and Subedi, Janardan, 38–59. Upper Saddle River, N.J.: Prentice Hall.Google Scholar
Bank, World. 1996. 1996 World Debt Tables, Volume 2: Country Tables. Washington, D.C.: The World Bank.Google Scholar
Yusuf, N. K. 1998. “Bio-ethical and Legal Issues in Relation to HIV/AIDS: The Uganda Experience.” Medicine and Law 17 (4): 619–24.Google ScholarPubMed