Research on HIV in Africa presents a mixed bag. A lot of researchers protect and respect participants. Research contributes to improvements in HIV programs — more testing, more and better treatment, and lower mother-to-child transmission. On the other hand, some researchers have not protected and respected research participants. Research projects listed here violate the Declaration of Helsinki – Ethical Principles for Medical Research Involving Human Subjects, articles 4 and 7: “It is the duty of the physician to promote and safeguard the health, well-being, and rights of patients, including those who are involved in medical research”; and “Medical research is subject to ethical standards that promote and ensure respect for all human subjects and protect their health and rights.”
Following people unaware of their infections to watch them get sick, die, infect spouses and babies. For example:
- A project in Masaka, Uganda followed HIV-positive men and women who did not know they were infected to watch them get sick and die, without providing any treatment for opportunistic infections or AIDS.
- Many projects followed followed people who did not know they were infected to watch them infect unsuspecting spouses (for example: circumcising men to watch women get HIV; projects in Uganda and Tanzania).
- A project in Zimbabwe followed new mothers who did not know they were infected to watch them infect breastfeeding babies (Zimbabwe).
Giving participants dangerous drugs: During 2015-18 researchers gave women Depo-provera (injections for birth control) to see how many would get HIV. Before the trial began, researchers had estimated from multiple previous studies that Depo-Provera increased women’s risk to get HIV by 40%-50%.
Comparing a proposed intervention to placebos rather than to the best available treatment (see, eg, 1990s research to prevent mother-to-child HIV transmission).
Not investigating evidence research hurt participants. For example:
Taking advantage of young women with extremely high risk for HIV to study very early infections rather than to find out how they are getting HIV: During 2012-16, researchers in KwaZulu-Natal, South Africa, followed young women, retesting them several times a week, to see what happens during new HIV infections. With such frequent tests, the study could have identified women’s risks. But it didn’t.
Incomplete report of research findings to suppress unwanted evidence: For more than 30 years, hundreds of studies in Africa have tested and followed HIV-negative adults to see who gets HIV. Such studies provide opportunities to find the risks responsible for new infections. Incomplete research has not identified risks. Here are examples of incomplete research: new infections in pregnant women; circumcision research; 44 randomized controlled trials of interventions to prevent HIV; not looking for the source of new infections identified within days. Some of this research is incomplete by design[2,3] — not asking about bloodborne risks and not tracing and testing sex partners. Other research is incompletely reported, violating the Declaration of Helsinki, article 28: “Researchers have a duty to make publicly available the results of their research on human subjects and are accountable for the completeness and accuracy of their reports.”
[Here’s another account of unethical research, with a table listing foreign sources of funding and foreign organizations that said the research was ethical.]
1. World Medical Association (WMA). WMA Declaration of Helsinki – ethical principles for medical research involving human subject, amended October 2013. Ferney-Voltaire, France: WMA, 2013. Available at: https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/ (accessed 29 January 2021).
2. Brody S, Potterat JJ. Establishing valid AIDS monitoring and research in countries with generalized epidemics. Int J STD AIDS 2004; 15: 1-6. Abstract available at: https://www.ncbi.nlm.nih.gov/pubmed/14769163 (accessed 27 October 2018).
3. Potterat JJ. Why Africa? the puzzle of intense t=HIV transmission in heterosexuals. Chapter 7 in: Potterat JJ. Seeking the positives: a life spent on the cutting edge of public health. CREATESPACE 2015. Available at: http://home.earthlink.net/~jjpotterat/books-downloads.html (accessed 27 October 2018).
4. Annex 2: Unethical HIV research in Africa, in: Gisselquist D. Stopping Bloodborne HIV: Investigating Unexplained Infections. London: Adonis & Abbey, 2021. Available at: https://sites.google.com/site/davidgisselquist/anx2sbh (accessed 29 January 2021).