Benefits and payments for research participants: experiences and views from a research centre on the Kenyan coast.
Benefits and payments for research participants: experiences and views from a research centre on the Kenyan coast.
复制标题
DOI：
10.1186/1472-6939-13-13
复制
发表时间：
2012-06-22
影响因子：
2.7
通讯作者：
Marsh V
中科院分区：
文献类型：
--
作者：
Molyneux S;Mulupi S;Mbaabu L;Marsh V
国际上普遍的共识是，研究收益的不公平分配是剥削性的，应该避免或减少。然而，什么是公平的福利，以及福利的确切性质及其提供方式可能会受到强烈质疑。实证研究有可能为辩论和指导方针提供观点和经验，但很少有人进行。我们进行了一项研究，以支持为肯尼亚Kilifi的KEMRI-Wellcome信托方案进行的研究制定福利和支付准则。在对所有方案研究(n = 38项研究)在研究期间提供的现金、保健服务和其他项目进行广泛的初步调查之后，对研究经理(n = 9)和参与8个有目的的案例研究(n = 30受访者)的研究人员进行了访谈。采访探讨了这些“好处”是如何被挑选和传达的，他们的管理经验，以及对未来指导方针的建议。在一名外部伦理学家的协助下，48名研究人员和卫生管理人员参加了一次协商讲习班，数据被输入其中。最常提供的福利是医疗(例如免费护理和加强护理质量)以及午餐或零食。发放给参与者的大部分现金是交通费的报销(例如，在意外生病时满足预约或方便使用服务)，但这些付款经常被研究参与者描述为福利。挑战包括：由于对谁有资格享受福利缺乏清晰度和协议而导致的家庭和社区内的紧张关系；对提供福利的动机的怀疑；以及福利类型和水平的研究之间的差异造成的混乱。研究人员在如何获得好处的问题上意见不一。与国际利益分享和辅助护理辩论的内容相呼应，一些研究人员认为研究是基于善意和伙伴关系，旨在避免参与者的成本和商业关系；而另一些研究人员则寻求最大化参与者的利益，因为机构的相对财富和社区的多重需求。一个新出现的中间立场是，通过与卫生部合作支持可持续性，加强社区的附带或间接医疗福利。
There 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. Following 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. The 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. Research 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.
登录
查看更多内容
认真对待社会关系：从肯尼亚海岸的疫苗试验的知情同意习惯中学到的教训。
影响因子：
5.4
作者：
Gikonyo, Caroline;Bejon, Philip;Marsh, Vicki;Molyneux, Sassy
通讯作者：
Molyneux, Sassy
影响因子：
1.6
作者：
London, Alex John
通讯作者：
London, Alex John
影响因子：
4.8
作者：
Chuma, Jane;Musimbi, Janet;Molyneux, Catherine
通讯作者：
Molyneux, Catherine
影响因子：
2.7
作者：
Marsh, Vicki M.;Kamuya, Dorcas M.;Molyneux, Sassy S.
通讯作者：
Molyneux, Sassy S.
影响因子：
5.4
作者：
Benatar, SR
通讯作者：
Benatar, SR