Conflicting perspectives on what constitutes fair compensation and benefits among research stakeholders in Malawi

Background: International ethics guidelines such as the Council for International Organizations of Medical Science (CIOMS) recommend that research participants must be compensated for their time, travel, and inconveniences. However, there is continued debate on what constitutes fair compensation and benefits for research participants. We conducted a qualitative study and sought views of various research stakeholders on what they considered as appropriate compensation and benefits for study participation in Malawi. 

Methods: We employed a qualitative study design and conducted 10 focus group discussions (FGD) with frontline researchers, community leaders, research participants, study decliners and Community Advisory Group (CAG) members from medical research projects conducted in rural and urban Malawi. We also conducted 17 in-depth interviews (IDI) with researchers, ethics committee members and District Health Officers. Thematic and framework analysis was used to interpret the results. 

Results: Our findings showed that ethics review committee members, researchers and frontline researchers had a common understanding of compensation, informed by available literature. On the other hand, some community members understood that compensation was given due to harm resulting from study participation while others indicated that intended study benefits were not visible to the community. Our study participants also expressed concerns that offering unequal compensation based on study design, procedures and risks had the potential to make some individuals feel devalued if they received lower payment amounts compared to others. 

Conclusion: This study revealed conflicting perspectives on compensation and benefits among research stakeholders. While stakeholders involved in conducting research had a shared understanding of compensation as reimbursement for time and costs, some community members viewed it as redress for harm. The disconnect suggests unequal access to information about research ethics among research stakeholders. Varying compensation based on study procedures also raised concerns over perceived inequalities and feelings of being devalued. These results suggest a need for consensus-building through inclusive stakeholder engagement and open dialogue to co-design guidelines that balance individual reimbursement and community benefits to advance ethical research practices centered on respect for participants.