Written By Tess Johnson
Lately, we have heard much in the media about disease transmission in conditions of poverty, given the crisis-point COVID-19 spread and mortality that India is experiencing. Yet, much of the conversation is centred on the ‘proximal’—or more direct—causes of morbidity and mortality, rather than the ‘structural determinants’—or underlying, systemic conditions that lead to disease vulnerability in a population. As a result, much global health research is focussed on infectious disease treatment and prevention, rather than responses to the complex political, economic and social needs that underly disease in vulnerable communities. This can result not only in less efficient and effective research, but also moral distress for researchers, and a disconnect between research goals and the responsibility that researchers feel for addressing a community’s immediate needs.
In her Special St Cross Seminar last week, Maureen Kelley introduced her audience to these problems in global health research. Professor Kelley outlined, first, empirical findings evidencing this problem, a result of research she recently performed with the Ethox Centre’s REACH team, in collaboration with global health research teams around the world. Second, she linked this empirical work to theory on moral distress and researchers’ and institutions’ responsibilities toward participating communities in low and middle-income countries (LMICs).
Global health research performed in LMICs is often run by research teams funded by and hailing from high-income countries (HICs). Whilst the benefits of this research may provide widespread global benefit, the greatest burden of disease does not match benefit distribution: rather, it lies primarily in regions with complex political, economic and social needs that exacerbate the vulnerability to and effects of disease in those areas. It is in the moral world of front-line researchers, that this benefit:burden imbalance manifests most clearly. For example, REACH studied researchers’ views on the provision of ancillary care for participants in a study on prevention of HIV infection in KwaZulu-Natal, South Africa. Public engagement officers who were interviewed experienced moral distress—feelings of powerlessness and lack of resources to respond adequately to a moral situation—surrounding the remit of research and inadequate ancillary care. One reported:
“The community expects us to meet/respond to their needs and we cannot do that. […] They need water, they need housing, roads, education […], and they expect this from us. This makes things difficult […] we always have to explain that, “no, service delivery is beyond our remit.”” (Public engagement participant 5)1
This reduced remit additionally creates what Professor Kelley calls a “bridge to nowhere” problem, wherein researchers are left directing participants to local ancillary care services, despite these often being unavailable or under-resourced. Research participants are left with their immediate needs unfulfilled, and with an uncertain long-term benefit from research conducted in their community.
In the second half of her talk, Professor Kelley challenged the narrow conception of researchers’ or institutions’ responsibilities toward participants in research. Whilst a more traditional conception of researchers’ obligations may require only compensation or reimbursement for research participants, the experiences of frontline health workers and researchers suggest that this is inadequate. Researchers feel moral distress because they feel there is a wider moral obligation toward participants, their families, and the community. A REACH study in Mae Sot, Thailand, found that researchers referred not only to a responsibility of reciprocity toward their research participants, but Krengjai/Arrnar, a more extensive solidarity- or empathy-based responsibility. Professor Kelley suggested that this moral concept may better ground a wider range of researchers’ responsibilities in global health research. This would involve not only compensation for participants, but also health care for families, and responsibilities to support the immediate needs of the wider community.
I was surprised at my own initial reaction to Professor Kelley’s suggestion of what we might ask of researchers and their institutions. You may, like me, initially fear for the future of global health research if research institutions must provide such extensive support in research communities. Surely research is then rendered economically infeasible. However, as Professor Kelley pointed out toward the end of the talk, this is not necessarily such a concern: global health research that neither properly targets the structural determinants of disease in LMICS, nor effectively supports communities’ immediate needs misaligns with the ultimate goals of global health research to begin with. Reducing the global burden of disease requires a redirection of research (and funding) toward the structural determinants of disease burden, and toward the kind of support for research communities that produces effective research and relieves the moral distress of those working on the ground.
Professor Kelley’s talk provided much-needed insight into the moral distress that is a symptom of an unwell system of global health research, and how it might be treated.
References:
- Nkosi B, Seeley J, Chimbindi N, Zuma T, Kelley M and Shahmanesh M. Managing ancillary care in resource-constrained settings: Dilemmas faced by frontline HIV researchers in a rural area in South Africa. International Health, Volume 12, Issue 6, November 2020, 543-550.