Njue Maureen, Kombe Francis, Mwalukore Salim, Molyneux Sassy, Marsh Vicki
Kenya Medical Research Institute (KEMRI) - Wellcome Trust Research Programme, PO Box 230, Kilifi, 80108, Kenya.
Kenya Medical Research Institute (KEMRI) - Wellcome Trust Research Programme, PO Box 230, Kilifi, 80108, Kenya; Centre for Tropical Medicine and Global Health, Nuffield Department of Medicine Research Building, Oxford University, Old Road Campus, Headington, Oxford, OX3 7FZ, United Kingdom; Ethox Centre, Nuffield Department of Population Health, Oxford University, Old Road Campus, Headington, Oxford, OX3 7LF, United Kingdom.
PLoS One. 2014 Dec 3;9(12):e113112. doi: 10.1371/journal.pone.0113112. eCollection 2014.
Planning 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.
Using 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.
Providing 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.
为低收入环境下国际健康研究的参与者规划研究福利和报酬可能是一个困难且有争议的过程，在平衡不当诱导和剥削风险以及理解研究人员应如何考虑背景不平等方面存在特殊挑战。在肯尼亚的一个国际健康研究项目中，本研究旨在梳理当地居民对不同水平的研究福利和报酬所产生影响的知情且合理的观点，以为当地政策及国际研究中的更广泛辩论提供信息。
采用一种相对新颖的两阶段社区咨询流程，举办了五场参与式研讨会，有来自不同选区的90名当地居民参加，随后进行了15次小组讨论，其中包括信息共享、审议和反思环节，以便在辩论中进行规范性推理。框架分析通过Nvivo 10软件以及国际研究伦理文献辅助，对录音讨论和实地记录进行归纳和演绎分析。社区成员对研究福利和报酬的看法各不相同，存在复杂的背景影响，以及给予“过多”和“过少”福利的风险之间的相互作用，包括现金的作用。虽然认识到给予“过多”福利对自由选择、研究关系和社区价值观存在重大风险，但最大的担忧是给予“过少”福利时的不公平风险，因为难以评估参与的间接成本，且低估这些成本会给家庭带来严重后果，这与对研究人员责任的认知有关。
向低收入环境下国际研究的参与者提供福利和报酬是研究人员履行个人层面和结构性道德责任的重要手段，但要理解如何实现这一点需要仔细考虑社会现实和当地判断。对低收入社区不当诱导的担忧可能常常被误置；我们认为应更加关注避免不公平，尤其是对最贫困者而言。
