Benefits and payments for research participants: Experiences and views from a research centre on the Kenyan coast

BMC Medical Ethics

Research Article

Lairumbi Mbaabu¹  Stephen Mulupi²  Vicki Marsh³  Sassy Molyneux⁴ 

[1] Child and Newborn Health Group, Kenya Medical Research Institute/Wellcome Trust Research Programme, P.O. Box 43640 – 00100, Nairobi, Kenya;Health Systems and Social Science Research Group, Kenya Medical Research Institute/Wellcome Trust Research Programme, P.O. Box 230, Kilifi, Kenya;Health Systems and Social Science Research Group, Kenya Medical Research Institute/Wellcome Trust Research Programme, P.O. Box 230, Kilifi, Kenya;Centre for Tropical Medicine, University of Oxford, OX3 7LJ, Oxford, UK;The Ethox Centre, Department of Public Health and Primary Health Care, Oxford University, OX3 7LJ, Oxford, UK;Health Systems and Social Science Research Group, Kenya Medical Research Institute/Wellcome Trust Research Programme, P.O. Box 230, Kilifi, Kenya;Centre for Tropical Medicine, University of Oxford, OX3 7LJ, Oxford, UK;The Ethox Centre, Department of Public Health and Primary Health Care, Oxford University, OX3 7LJ, Oxford, UK;Kenya Medical Research Institute/Wellcome Trust Research Programme, P.O. Box 230, Kilifi, Kenya;

关键词: Travel Cost;    Malaria Vaccine;    Medical Benefit;    Community Benefit;    Kenya Medical Research Institute;   

DOI  :  10.1186/1472-6939-13-13

 received in 2012-01-21, accepted in 2012-06-22,  发布年份 2012

来源: Springer

【 摘 要 】

BackgroundThere is general consensus internationally that unfair distribution of the benefits of research is exploitative and should be avoided or reduced. However, what constitutes fair benefits, and the 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 and guidelines, but few have been conducted. We conducted a study to support the development of guidelines on benefits and payments for studies conducted by the KEMRI-Wellcome Trust programme in Kilifi, Kenya.MethodsFollowing an initial broad based survey of cash, health services and other items being offered during research by all programme studies (n = 38 studies), interviews were held with research managers (n = 9), and with research staff involved in 8 purposively selected case studies (n = 30 interviewees). Interviews explored how these ‘benefits’ were selected and communicated, experiences with their administration, and recommendations for future guidelines. Data fed into a consultative workshop attended by 48 research staff and health managers, which was facilitated by an external ethicist.FindingsThe most commonly provided benefits were medical care (for example free care, and strengthened quality of care), and lunch or snacks. Most cash given to participants was reimbursement of transport costs (for example to meet appointments or facilitate use of services when unexpectedly sick), but these payments were often described by research participants as benefits. Challenges included: tensions within households and communities resulting from lack of clarity and agreement on who is eligible for benefits; suspicion regarding motivation for their provision; and confusion caused by differences between studies in types and levels of benefits.ConclusionsResearch staff differed in their views on how benefits should be approached. Echoing elements of international benefit sharing and ancillary care debates, some research staff saw research as based on goodwill and partnership, and aimed to avoid costs to participants and a commercial relationship; while others sought to maximise participant benefits given the relative wealth of the institution and the multiple community needs. An emerging middle position was to strengthen collateral or indirect medical benefits to communities through collaborations with the Ministry of Health to support sustainability.

【 授权许可】

CC BY   
© Molyneux et al.; licensee BioMed Central Ltd. 2012