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

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  • Maureen Njue
  • Sassy Molyneux
  • Francis Kombe
  • Salim Mwalukore
  • Dorcas Kamuya
  • Vicki Marsh

Abstract

Background: Providing benefits and payments to participants in health research, either in cash or in kind, is a common but ethically controversial practice. While much literature has concentrated on appropriate levels of benefits or payments, this paper focuses on less well explored ethical issues around the nature of study benefits, drawing on views of community members living close to an international health research centre in Kenya. Methods: The consultation, including 90 residents purposively chosen to reflect diversity, used a two-stage deliberative process. Five half-day workshops were each followed by between two and four small group discussions, within a two week period (total 16 groups). During workshops and small groups, facilitators used participatory methods to share information, and promote reflection and debate on ethical issues around types of benefits, including cash, goods, medical and community benefits. Data from workshop and field notes, and voice recordings of small group discussions, were managed using Nvivo 10 and analysed using a Framework Analysis approach. Findings and Conclusions: The methods generated in-depth discussion with high levels of engagement. Particularly for the most-poor, under-compensation of time in research carries risks of serious harm. Cash payments may best support compensation of costs experienced; while highly valued, goods and medical benefits may be more appropriate as an ‘appreciation’ or incentive for participation. Community benefits were seen as important in supporting but not replacing individual-level benefits, and in building trust in researcher-community relations. Cash payments were seen to have higher risks of undue inducement, commercialising relationships and generating family conflicts than other benefits, particularly where payments are high. Researchers should consider and account for burdens families may experience when children are involved in research. Careful context-specific research planning and skilled and consistent communication about study benefits and payments are important, including in mitigating potential negative effects.

Suggested Citation

  • Maureen Njue & Sassy Molyneux & Francis Kombe & Salim Mwalukore & Dorcas Kamuya & Vicki Marsh, 2015. "Benefits in Cash or in Kind? A Community Consultation on Types of Benefits in Health Research on the Kenyan Coast," PLOS ONE, Public Library of Science, vol. 10(5), pages 1-17, May.
  • Handle: RePEc:plo:pone00:0127842
    DOI: 10.1371/journal.pone.0127842
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    References listed on IDEAS

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    1. De Vries, Raymond & Stanczyk, Aimee & Wall, Ian F. & Uhlmann, Rebecca & Damschroder, Laura J. & Kim, Scott Y., 2010. "Assessing the quality of democratic deliberation: A case study of public deliberation on the ethics of surrogate consent for research," Social Science & Medicine, Elsevier, vol. 70(12), pages 1896-1903, June.
    2. Molyneux, C.S. & Peshu, N. & Marsh, K., 2005. "Trust and informed consent: insights from community members on the Kenyan coast," Social Science & Medicine, Elsevier, vol. 61(7), pages 1463-1473, October.
    3. Marsh, Vicki & Kamuya, Dorcas & Rowa, Yvonne & Gikonyo, Caroline & Molyneux, Sassy, 2008. "Beginning community engagement at a busy biomedical research programme: Experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya," Social Science & Medicine, Elsevier, vol. 67(5), pages 721-733, September.
    4. Maureen Njue & Francis Kombe & Salim Mwalukore & Sassy Molyneux & Vicki Marsh, 2014. "What Are Fair Study Benefits in International Health Research? Consulting Community Members in Kenya," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-21, December.
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