Academic journal article Human Organization

Rights and Wrongs: HIV/AIDS Research in Africa

Academic journal article Human Organization

Rights and Wrongs: HIV/AIDS Research in Africa

Article excerpt

This paper, which is based on a pilot study in Africa, raises a host of ethical issues in relation to 'applying' anthropology and collaborative HIV/AIDS research. The author identifies major issues related to the reproductive rights of women and the welfare of their infants in the context of HIV/AIDS research in Africa. The account considers the implications of apparently well-intentioned research that fails to safeguard the well being and dignity of the people involved. It exposes serious problems concerning the lack of informed consent in a medical research project on antenatal testing and mother-to-child-transmission of HIV. Furthermore, the study draws attention to the need for repeated screening for new ethical issues in ongoing medical (and other) research projects involving research participants whose rights might be overlooked in outdated ethics considerations. The paper cautions anthropologists (and other researchers) about being "co-opted" by those in authority, and serves as a reminder about the 'do no harm' dictum.

Key words: HIV/AIDS, ethics, informed consent, human rights, women's reproductive rights, breastfeeding, Africa

Introduction

While there exists a considerable body of literature examining the AIDS crisis' and the devastation it reaps for individuals and their families and, indeed, entire countries, there is little public awareness of AIDS research practices2. Medical research is a case in point. Even though there are numerous publications indicating the results of epidemiological studies about seropositivity and transmission rates (Fabiani et al 2001 ; GAWH 2002), there is little known about the process (i.e., how medical researchers conduct HIV/AIDS related research projects, and the impact these projects have on the participants involved). This paper describes and analyzes the research process for one such project. It focuses specifically on the issues of informed consent and ethics in the context HIV/AIDS research in developing countries.

This case study emerged from an HIV/AIDS antenatal testing project based in a small remote hospital in Zaire3. The United Kingdom (UK) medical researchers involved invited me to carry out a pilot study, which aimed to gather qualitative data related to the socio-behavioral factors involved in HIV transmission amongst women in the antenatal project. The pilot study was a collaborative effort between medical practitioners, technical experts, and anthropologists. The research raised major ethical concerns regarding informed consent, and highlighted critical issues related to social science methods in the context of interdisciplinary research. The experience made me question if medical researchers operate under a different set of ethical guidelines from anthropologists.

A longer-term objective of the pilot study was to work directly in the field with an African anthropologist to design an in-depth, 18-month study on the topic and to draft a funding proposal to support this research. I did not pose as an expert on HIV/AIDS, but having prior experience with HIV/AIDS research and projects, I felt that I would be able to provide some insight into the non-epidemiological aspects of the research.

This paper discusses the various rights (gender issues, choices, empowerment) and wrongs (control, exclusion) that emerged during the study. The pilot study exposed underlying tensions in the relationships between the researchers and practitioners4 in the North and South, and the participants involved in the antenatal research project. The UK medical researchers claimed that their research guidelines and ethical considerations reflected the will of 'local people' but, in fact, these reflected the involvement of a few select authority figures in the hospital and community. As discussed below, the original antenatal project focused almost exclusively on women. Post-testing investigations analyzed women's HIV risk and vulnerability according to ill-defined marital categories and in terms of their husbands' occupations. …

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