Background:
There is general consensus internationally that unfair distribution of the benefits of researchis exploitative and should be avoided or reduced. However, what constitutes fair benefits, andthe exact nature of the benefits and their mode of provision can be strongly contested.Empirical studies have the potential to contribute viewpoints and experiences to debates andguidelines, but few have been conducted. We conducted a study to support the developmentof guidelines on benefits and payments for studies conducted by the KEMRI-Wellcome Trustprogramme in Kilifi, Kenya.
Methods:
Following an initial broad based survey of cash, health services and other items being offeredduring research by all programme studies (n = 38 studies), interviews were held with researchmanagers (n = 9), and with research staff involved in 8 purposively selected case studies(n = 30 interviewees). Interviews explored how these ‘benefits’ were selected andcommunicated, experiences with their administration, and recommendations for futureguidelines. Data fed into a consultative workshop attended by 48 research staff and healthmanagers, which was facilitated by an external ethicist.FindingsThe most commonly provided benefits were medical care (for example free care, andstrengthened quality of care), and lunch or snacks. Most cash given to participants wasreimbursement of transport costs (for example to meet appointments or facilitate use ofservices when unexpectedly sick), but these payments were often described by researchparticipants as benefits. Challenges included: tensions within households and communitiesresulting from lack of clarity and agreement on who is eligible for benefits; suspicionregarding motivation for their provision; and confusion caused by differences betweenstudies in types and levels of benefits.
Conclusions:
Research staff differed in their views on how benefits should be approached. Echoingelements of international benefit sharing and ancillary care debates, some research staff sawresearch as based on goodwill and partnership, and aimed to avoid costs to participants and acommercial relationship; while others sought to maximise participant benefits given therelative wealth of the institution and the multiple community needs. An emerging middleposition was to strengthen collateral or indirect medical benefits to communities throughcollaborations with the Ministry of Health to support sustainability.