What Are Fair Study Benefits in International Health Research? Consulting Community Members in Kenya

Abstract

BackgroundPlanning study benefits and payments for participants in international health research in low- income settings can be a difficult and controversial process, with particular challenges in balancing risks of undue inducement and exploitation and understanding how researchers should take account of background inequities. At an international health research programme in Kenya, this study aimed to map local residents' informed and reasoned views on the effects of different levels of study benefits and payments to inform local policy and wider debates in international research.Methods and FindingsUsing a relatively novel two-stage process community consultation approach, five participatory workshops involving 90 local residents from diverse constituencies were followed by 15 small group discussions, with components of information-sharing, deliberation and reflection to situate normative reasoning within debates. Framework Analysis drew inductively and deductively on voice- recorded discussions and field notes supported by Nvivo 10 software, and the international research ethics literature. Community members' views on study benefits and payments were diverse, with complex contextual influences and interplay between risks of giving ‘too many’ and ‘too few’ benefits, including the role of cash. While recognising important risks for free choice, research relationships and community values in giving ‘too many’, the greatest concerns were risks of unfairness in giving ‘too few’ benefits, given difficulties in assessing indirect costs of participation and the serious consequences for families of underestimation, related to perceptions of researchers' responsibilities.ConclusionsProviding benefits and payments to participants in international research in low-income settings is an essential means by which researchers meet individual-level and structural forms of ethical responsibilities, but understanding how this can be achieved requires a careful account of social realities and local judgment. Concerns about undue inducement in low-income communities may often be misplaced; we argue that greater attention should be placed on avoiding unfairness, particularly for the most-poor.

Ethical considerations in Controlled Human Malaria Infection studies in low resource settings: Experiences and perceptions of study participants in a malaria Challenge study in Kenya

“…Given recognized concerns about balancing appropriate compensation against concerns about undue risk 21– 23 , the CHMI study team consulted widely within the research Programme regarding the levels and types of compensation to provide. The daily amount provided was in line with average earning for the local community to whom the study was relevant, as was reported in the interviews.…”

Providing monetary and non-monetary goods to research participants: perspectives and practices of researchers and Research Ethics Committees in Zambia

“…Far less has been documented, empirically, about practices, attitudes and policies related to provision of goods to research participants in lowand middle-income countries (LMICs), though concerns have been expressed (Boutin-Foster et al, 2013;Dickert & Grady, 1999;Hyder, Rattani, Krubiner, Bachan, & Tran, 2014;Molyneux et al, 2012;Njue et al, 2015;Njue, Kombe, Mwalukore, Molyneux, & Marsh, 2014). Few studies in sub-Saharan Africa have assessed the types of benefits offered to participants and fairness of such benefits (Molyneux et al, 2012;Njue et al, 2014). These studies focused on benefits offered in studies conducted by the Kenya Medical Research Institute (KEMRI)-Wellcome Trust program in Kilifi, Kenya.…”

Benefits in Cash or in Kind? A Community Consultation on Types of Benefits in Health Research on the Kenyan Coast

“…This paper draws on a qualitative study set up as a community consultation on study benefits and payments to support the development of locally responsive policies at an international health research programme in Kilifi, Kenya, and to contribute to wider international debates. Findings on the ethical work of boundaries for levels of benefits and payments from this consultation have been published elsewhere [ 10 ]. An earlier study explored common practices and the views of diverse research staff on study benefits and payments at the programme [ 8 ].…”

“…These livelihoods present challenges for identifying appropriate levels of compensation for time, with any underestimates potentially impacting on a bread winner’s ability to feed their family on a daily basis. Risks of ‘overcompensation’ were also seen, primarily in relation to the researcher-participant/community relationships, including commercialisation, loss of trust and generation of rumours; but also in terms of benefits introducing inequities and disrupting values within families and communities [ 10 ]. As noted above, this paper focuses on the role of the nature of benefits in influencing these and other ethical challenges.…”