UNC Fogarty Bioethics Research Capacity Building Project

Read this article from Project Manager Bavon Mupenda, MPH, on the UNC Fogarty Bioethics Research Capacity Building Project in Kinshasa, Democratic Republic of the Congo.

UNC Fogarty Bioethics Research Capacity Building Project click to enlarge Bavon Mupenda, MPH, at Lake Kivu, DRC

The multidisciplinary nature of the scholar group leading the Kinshasa team is one of its strengths. The team consists of a lawyer, a social scientist with a public health degree and extensive training in bioethics, a medical doctor, and a philosopher with extensive training in bioethics. This allows for various perspectives to enrich our debates and decision making.

During my involvement in the UNC Fogarty Capacity Building project, I have improved my skills in evaluating local ethical problems in medicine and public health, and in writing papers for peer reviewed publication. These skills now need to be expanded to other people connected to the center I work in.

We have organized workshops that led to the creation of research ethics committees that are essentially institutional review boards, IRBs. We did this in five localities, all having universities that are nationally prominent: Kinshasa, Lubumbashi, Kisangani, Kananga and Mbanza Ngungu. So far, two research ethics committees have been able to sustain their operations independently: Kinshasa and Kisangani. The others will need more resources and support in the future.

Our center also serves as an advisory team for other UNC scientific projects in the country, assisting them with ethical dilemmas calling for expertise from skilled people, as well as from other local health-related organizations and projects.

 

Among local health problems raising ethical issues are:

Prevention of mother to child transmission of HIV. UNC has projects attempting to design effective models of preventing children getting HIV from their HIV positive mothers. One ethical problem is: once a study is done, will the mother have continued (free) access to HIV treatment and care? The projects have also expanded to include treatment of household members, leading to questions of equity: why should only certain people connected to the projects get HIV treatment when local needs are so great?

Street children. Kinshasa has a huge street orphan community. Many of these children were abandoned by their parents, or their parents died, often from HIV-related causes. Some of the children have HIV among other health conditions, and health research on them is important. But questions of informed consent are problematic here too, as there is often no legal guardian around to give permission. Besides this, there is an overarching problem to all health research in developing countries, including DR Congo. Often research participants have serious needs that have nothing or little to do with the disease or condition under study. In Kinshasa, this is often food: there are regular food crises, and it is known that the majority of people only are able to eat sporadically. What should researchers do in this situation? What are their responsibilities? To do nothing (and merely collect data) seems inhuman, but researchers cannot substitute for local health systems.

- By Bavon Mupenda, MPH, Project Manager

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