Academic journal article African Studies Review

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

Academic journal article African Studies Review

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

Article excerpt

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.

International collaborative trials of short-course zidovudine (AZT) to reduce mother-to-child HJV transmission, conducted in nine African countries, sparked heated worldwide debate in the medical literature, the bioethics literature, and the popular press at the close of the twentieth century.1 This debate has since led to revisions in ethical codes in the conduct of international clinical research, and to a fragile consensus prohibiting researchers from using placebo in conditions for which a known effective treatment is available. It has also reinforced a deep, if rarely articulated, distinction between the ethics of research and the ethics of therapy.

As a doctor who had spent time working in a Malavviati hospital, confronted with the ramifications of AIDS and inadequate resources daily, I found certain emphases and omissions puzzling during the years this debate raged. As an anthropologist, I saw hegemony at work. That hegemony has only grown stronger as this particular controversy recedes into the past. It is my intent in this article to open some of the bioethical considerations of the debate to a readership with deep knowledge of African ethics and philosophies. Challenging an America-centric "international bioethics" may lead to a more thoughtful search for solutions to problems of inequity in research and therapy alike.

A Time Line

1982: Public health officials in the United States first reported apparent mother-to-child transmission of an acquired immune deficiency complex (Morbidity and Mortality Weekly Report 1982). Meanwhile, doctors working in Central and East Africa began to see increasing numbers of patients suffering from the wasting syndrome Africans called "slim disease." North American and European researchers were beginning to call a similar syndrome AIDS, and soon it would become clear that the two were caused by the same virus (Iliffe 2006; Serwadda et al. 1985).

1990: In a large Malawi hospital, I watched at the bedside of a pale young woman who had just given birth and was now dying: her breathing was shallow, her heartbeat irregular, her consciousness waning. In the bay of the overcrowded postnatal ward reserved for acutely ill patients - the bay closest to the lone nurse who looked after the ward's sixty-odd patients the dying woman was the only one not sharing her narrow metal cot with another patient. It was not because she had AIDS; many of the women in the ward did. (That year an estimated 60 percent of the nine million people living with HIV worldwide were Africans. One would not have guessed as much by perusing the medical literature, in which gay men and intravenous drug users in the West were still the major focus.2) But her thin body was covered with rotting lesions of Kaposi's sarcoma, and the terrible smell kept the others away.

At the hospital to which I would return in the United States, a drug that prolonged life in HIV-positive individuals had been available for three years. AZT was the first real success in a class of medications known as antiretrovirals, and it was having a miraculous impact on patients who not long before would have died quickly. In Malawi, AZT was not available.

Through the ward's open windows, we could just glimpse the stalls of the herbalists who hawked their medicines in the sycamore shade outside the hospital: roots and decoctions for tuberculosis, for infertility, for the relentless disease that made young healthy people waste away slowly. …

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