How can HIV researchers conduct ethical clinical trials in developing countries?
At TEDxGoodenoughCollege, Cameroonian researcher Dr. Boghuma Kabisen Titanji begins with the story of a housewife in rural Cameroon who participated in a HIV clinical trial, but was unable to remain in it due to her inability to afford the bus fare to travel to the clinic.
This story illustrates the tension, to Titanji, between determining whether potentially life-saving drugs work and the greater needs of trial participants.
I do not stand here today to suggest in any way that conducting HIV clinical trials in developing countries is bad. On the contrary, clinical trials are extremely useful tools, and are much needed to address the burden of disease in developing countries. However, the inequalities that exist between richer countries and developing countries in terms of funding pose a real risk for exploitation, especially in the context of externally-funded research. Sadly enough, the fact remains that a lot of the studies that are conducted in developing countries could never be authorized in the richer countries which fund the research.
She recommends improving clinical trials a few ways. First, by improving informed consent procedures. That means that participants must fully understand the trial. To do so, information should be presented in a way that maximizes understanding. A written form makes little sense when signed by someone who is illiterate. Second, she calls for a careful examination of the standard of care for the control group. "It is important to assess the potential risks and benefits of the standard of care which is to be provided to participants in any clinical trial, and establish one which is relevant for the context of the study and most beneficial for the participants within the study," she argues.
Third, transparency and local accountability will help to ensure that clinical trials are done ethnically. Her last point stresses the importance of thinking of the participants beyond the study. She advocates for studies to consider ways to maintain effective levels of treatment for participants after the study concludes and to look at ways to support the wider community.
Titanji concludes by issuing a challenge to the audience members and the research community saying, "If you are a researcher, I hold you to a higher standard of moral conscience, to remain ethical in your research, and not compromise human welfare in your search for answers. If you work for a funding agency or pharmaceutical company, I challenge you to hold your employers to fund research that is ethically sound. If you come from a developing country like myself, I urge you to hold your government to a more thorough review of the clinical trials which are authorized in your country."