Unethical and incomplete HIV research
Some good, some not
Research on HIV in Africa presents a mixed bag. A lot of researchers protect and respect participants. Research has contributed to recent 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 participants, and a lot of research — especially on adult risks for HIV — has been badly designed and managed.
Unethical HIV research in Africa
Some projects followed people who didn’t know they were infected:
Some projects gave research people useless or dangerous treatments to see what happened (for example: 1990s research to prevent mother-to-child HIV transmission; depo-provera in multiple countries).
Some projects didn’t investigate when people in the project suffered health damage that seemed to be related to what researchers did to them (for example: baby’s death in Botswana; HIV infections during research in Kenya and elsewhere).
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. However, almost all such studies have been incomplete in two ways:
- not tracing and testing sexual partners; and
- not asking about and investigating skin-piercing procedures.
Incomplete research cannot identify 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.
Harm from unethical and incomplete research
Unethical research harms some research participants. That is bad enough. However, the habits of thought that result in unethical research — that allow experts to act differently in Africa than in their home countries — pervade HIV prevention and research activities in Africa. Such habits of thought have much more extensive damage to African health and well-being. For example:
- Incomplete research and HIV prevention. Rather than do what is obvious (and well established in epidemiology[1,2]) funders and researchers have been maintaining a farce for more than 30 years — funding and managing research ostensibly to find risks, but then not looking for risks (not tracing sex partners, not asking about blood exposures). The farce of incomplete research guides incomplete prevention programs that have ignored important risks, allowing millions of unnecessary infections and deaths.
- Stigma. Blaming HIV infections on sex diverts attention away from infections coming from healthcare. Such messages not only stigmatize HIV-positive Africans (spouses, adolescents) but also support racist stereotypes of all Africans. Such messages are a form of sexual abuse: accusing HIV-positive Africans of culturally unacceptable sexual behavior despite lack of evidence.
1. 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.
2. 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).