Participant compensation in global health research: a case study

Abstract

Background Compensation for research participants can be provided for reasons including reimbursement of costs; compensation for time lost, discomfort or inconvenience; or expression of appreciation for participation. This compensation involves numerous ethical complexities, at times entailing competing risks. In the context of transnational research, often incorporating contexts of economic inequality, power differentials and post-colonialism, these issues extend into wider questions of ethical research conduct. Methods We describe experiences of conducting a community-based study of air pollution in southern Malawi incorporating ethnographic, participatory and air quality monitoring elements. Decisions surrounding participant compensation evolved in response to changing circumstances in the field. Results Attention to careful researcher–participant relationships and responsiveness to community perspectives allowed dynamic, contextualised decision-making around participant compensation. Despite widely cited risks, including but not restricted to undue influence of monetary compensation on participation, we learned that failure to adequately recognise and compensate participants has its own risks, notably the possibility of ‘ethics dumping’. Conclusions We recommend active engagement with research participants and communities with integration of contextual insights throughout, including participant compensation, as for all elements of research conduct. Equitable research relationships encompass four central values: fairness, care, honesty and respect.

Exploring smoke: an ethnographic study of air pollution in rural Malawi

“…In-country ethical approval was granted by the College of Medicine Research Ethics Committee (COMREC) in Blantyre (P.02/19/2600). Ethical enquiry, running through the project, was characterised by the ‘relational ethics’ approach74 as previously described 75…”

“…Ethical enquiry, running through the project, was characterised by the 'relational ethics' approach 74 as previously described. 75 Patient and public involvement The local community guided methodological decisions throughout the ethnography. The involvement of a resident 'village fieldworker' enhanced the integration of community perspectives into the study.…”

Spotlight on global health research

“…The design of global health research raises particular ethical issues related to both participant reimbursement and the provision of ancillary care to individuals who may live in resource-limited settings with weak healthcare infrastructure. Reflecting on their ethnographic community-based study of air pollution in Malawi, Saleh et al 4 demonstrate the complexity of decision-making around participant compensation and encourage researchers to engage with research participants and communities to develop and evolve their approach. Sansom and colleagues from the Oxford University Clinical Research Unit in Vietnam outline the steps their institution took to develop a fair and transparent research participant compensation and reimbursement framework, encouraging others to learn from and adapt their method.…”

Dynamics of Cumulative Advantage and Threats to Equity in Open Science - A Scoping Review

“…It is the latter, rooted in traditions of participatory research, that most directly and strongly challenges the dynamics of inequality within academia [203,205]. Participatory research is directed by a self-reflexive, critical, ethics-focused approach to research design, conduct, distribution of labour [206] and financial benefits [206][207][208], outputs and impacts [207][208][209][210][211]. Questions of equality, justice and equity are often centred [204,208,210,[212][213][214] and the knowledge produced reflects the lived experience and situated expertise of the participants and communities upon which the research is focused [204,205,215,216].…”

“…When participants serve merely as free data collectors, those who primarily benefit are researchers [211,[222][223][224]. Where such practices bridge the global north and south, data extraction absent anything else echoes colonial exploitation [207]. Additionally, there are issues of biased inclusion in terms of the populations that are invited to participate in traditional Citizen Science [225,226], with the most marginalized groups likely to be left out [222,223,227,228].…”