An Ethics of Anthropology-informed Community Engagement with COVID-19 Clinical Trials in Africa

"Maintaining the integrity of community engagement is...an increasingly important moral test against potential exploitation by scientific and pharmaceutical industries."

The COVID-19 pandemic inspired community suspicions and distrust of governments, medical authorities, and pharmaceutical companies, as manifested in various forms of civil society mobilisation. In South Africa, for instance, there were large-scale protests in response to early trials of the AstraZeneca COVID-19 vaccine, which was developed and manufactured in Europe, making recruitment of disadvantaged black populations difficult despite efforts to marshal intensive community engagement strategies. This paper makes the case that more discerning anthropological engagement as well as wider collaboration with other social scientists and those working in the humanities could improve the ethics of current biomedical and pharmaceutical research practice in Africa.

The paper begins by exploring the purpose of community engagement in global health research. The strategy of community engagement was initially deployed in the context of clinical research, often designed by researchers and sponsors in developed countries, to be carried out in Africa and other low- and middle-income countries (LMICs). In theory, community engagement (like community or patient participation in health programmes) is supposed to ensure that the proposed research responds to the genuine needs of the host community and that the activities planned by scientists are morally acceptable to the community. However, criticism about community engagement in clinical trials highlights the fact that scientific, corporate, and funding networks have difficulties with - and conflicts of interest in - evaluating community voices and concerns. The risk is that community engagement can become a kind of piecemeal exercise to validate predetermined plans, and it can even involve the sidestepping of complaints and dissenting voices under the guise of "education".

In reviewing current practices across Africa, this paper distinguishes between three distinct roles for community engagement in clinical research that are often conflated: (i) the importance of community engagement for identifying and honouring cultural sensitivities; (ii) the importance of recognising the socio-political context in which the research is proposed; and (iii) the importance of understanding what is in the interest of communities recruited to research according to their own views and values.

Since the West African Ebola epidemic, anthropology has assumed an increasingly important role in policy discourses about how to improve outbreak response. The researchers urge some caution when relying on anthropological knowledge when it comes to community engagement for clinical trials; for example, there is a risk of over-generalising the motivation of people to participate in clinical trials in order to present simplistic or selective data that supports biomedical narratives about recruitment. In addition, in places with multiple ethnicities and different religions and outlooks, an anthropological approach to community engagement could be misleading by recording an unrepresentative sub-section of the host population as artificially homogenous.

Thus, as argued here, the COVID-19 pandemic underlines a need to draw on a wide range of social science disciplines beyond anthropology. For example, methods used in behavioural economics such as standard gambles (as used in expected utility theory) and scenario experiments could help to elucidate how people trade off different values (e.g., between different public health measures) to elicit preferences in more formalised ways.

In fact, the researchers explain that "an ethics of community engagement requires more careful justification when anthropological study is included. In particular, community engagement practitioners require a role as either community or research advocates especially when their interests pull apart. All engagement practitioners will thus need to reflect on their practice and independent checks sought when potential conflicting interests potentially threaten their integrity. Limitations to their abilities to advocate for communities beyond the immediate clinical research team need to be recognised to cultivate trustworthy institutions."

In conclusion: "Risks associated with pre-existing imbalances of power between researchers (together with their often-funded teams of engagement practitioners) and the communities they should serve is even more important to illuminate and mitigate against. Clear unambiguous roles for community engagement practitioners as advocates is needed more than ever to ensure that research is coordinated and governed in the interests of the communities that participate in it."