Navigating ethical issues affecting care continuity during biomedical research on neglected diseases of poverty in sub-Saharan Africa

There is an urgent need for research on the debilitating neglected tropical diseases (NTDs) that affect more than 1.7 billion people globally, the majority of whom live in sub-Saharan Africa (SSA). NTDs include more than 20 diseases of poverty that disproportionately impact the poorest populations in the most resource-constrained environments. Many NTDs present as chronic infections, such as schistosomiasis—an NTD transmitted through contact with contaminated water—which are difficult to manage, requiring further research for development of clear management strategies. However, managing such biomedical research in the resource-constrained environments where NTDs are endemic raises complex ethical questions regarding continuity of care. Due to limited health system capacity in these settings, essential medical commodities and specialized healthcare providers may not be available. In the case of chronic schistosomiasis infection, access to care is further complicated by the lack of official clinical care guidelines for managing schistosomiasis-associated gut and liver morbidities. Despite these challenges, the Council for International Organizations of Medical Sciences, the World Health Organization, and the Nuffield Council on Bioethics all state that research sponsors have an ethical obligation to make a reasonable effort to meet the health needs of research participants during research activities. Considering the ambiguity of this statement, what are the obligations of researchers to research participants and the local health system if the necessary treatment is not available or has not yet been developed? To facilitate further research on NTDs and other health conditions endemic in impoverished settings, there is thus a need for practical and ethical guidance for researchers working in these settings to appropriately collaborate with public sector health system partners to ensure continuity of care for research participants.  

This bioethics project combines ethical analysis with the collection of empirical data to understand how a biomedical research study on NTDS in SSA may navigate ethical challenges relating to care continuity. The case study selected for this research is SchistoTrack, a longitudinal study on chronic schistosomiasis infection conducted in Uganda through partnership with the University of Oxford and the Uganda Ministry of Health Vector Control Division. Through focused ethnographic observation, semi-structured interviews and focus group discussions with SchistoTrack team members and local health workers engaged in research activities, this project aims to inform guidance for care continuity during biomedical research embedded within health systems in SSA.