{"title":"一便士给你的想法?将科研经费透明度从成语走向政策","authors":"Brandon Brown, Jerome Galea","doi":"10.31478/202305a","DOIUrl":null,"url":null,"abstract":"Payment for participation in research—especially clinical research—is a common practice, but researchers often find themselves working in a “black hole” regarding payment. There are no well-described standards for decision-making on payment amounts and forms of payment, apart from the Belmont Report’s abstract warnings against exerting “coercion and undue influence” (HHS, 1979). Without tools to support decision-making in this area, payment decision practices tend to be subjective and based on personal experience; researchers with no experience in this area may make payment decisions for research participation based on available funds, personal notions, and guesswork of “what’s best.” Nonetheless, the authors know from personal experience that payment decisions can significantly impact studies at each step of the CONSORT process, from screening and enrollment to condition allocation and retention and, ultimately, data analysis and reporting (Altman et al., 2001). Emerging data on payment decision-making—although still limited—reveals a complex web of factors that drive payment amounts, including participant type, proximity to the study site, risks involved, procedure invasiveness, and the expectations of research participants themselves, which may be based on their experiences in other studies. Given the potential influence of these myriad factors on study participation, it is therefore surprising that to date there has been a relative absence of attention and transparency on what, how, when, and by whom participant payments are determined (Anderson and Brown, 2021). The prevailing worry about participant payments is that they could be coercive or cause undue influence on participants’ decisions to participate in research or undertake certain study procedures. More recently, however, ethicists have moved away from this paradigm to focus on the opposite issue: underpayment of people who participate in research, and the ethical principle of beneficence (Largent and Lynch, 2017). Although ethics committees do not typically consider payment in the risk/benefit ratio when reviewing research, participants may view payment as another benefit of research participation. 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Without tools to support decision-making in this area, payment decision practices tend to be subjective and based on personal experience; researchers with no experience in this area may make payment decisions for research participation based on available funds, personal notions, and guesswork of “what’s best.” Nonetheless, the authors know from personal experience that payment decisions can significantly impact studies at each step of the CONSORT process, from screening and enrollment to condition allocation and retention and, ultimately, data analysis and reporting (Altman et al., 2001). Emerging data on payment decision-making—although still limited—reveals a complex web of factors that drive payment amounts, including participant type, proximity to the study site, risks involved, procedure invasiveness, and the expectations of research participants themselves, which may be based on their experiences in other studies. 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引用次数: 0
摘要
为参与研究——尤其是临床研究——支付报酬是一种常见的做法,但研究人员经常发现自己在报酬方面陷入了“黑洞”。除了贝尔蒙特报告抽象地警告不要施加"胁迫和不当影响"(卫生与公众服务部,1979年)外,关于付款数额和付款形式的决策没有明确的标准。如果没有工具来支持这一领域的决策,付费决策实践便会变得主观且基于个人经验;在这方面没有经验的研究人员可能会根据可用的资金、个人观念和对“什么是最好的”的猜测来做出研究参与的支付决定。尽管如此,作者从个人经验中知道,支付决策可以显著影响CONSORT过程的每一步研究,从筛选和登记到条件分配和保留,最终,数据分析和报告(Altman et al., 2001)。关于支付决策的新数据——尽管仍然有限——揭示了驱动支付金额的复杂因素网络,包括参与者类型、与研究地点的接近程度、涉及的风险、程序侵入性和研究参与者自己的期望,这可能是基于他们在其他研究中的经验。考虑到这些无数因素对研究参与的潜在影响,因此令人惊讶的是,迄今为止,对于参与者支付的内容、方式、时间以及由谁决定,相对缺乏关注和透明度(Anderson and Brown, 2021)。对参与者付款的普遍担忧是,它们可能是强制性的,或对参与者参与研究或进行某些研究程序的决定造成不当影响。然而,最近伦理学家已经离开了这一范式,转而关注相反的问题:参与研究的人的报酬不足,以及慈善的伦理原则(Largent和Lynch, 2017)。虽然伦理委员会在审查研究时通常不考虑风险/收益比中的报酬,但参与者可能会将报酬视为参与研究的另一个好处。参与式支付研究进展
A Penny for Your Thoughts? Moving Research Payment Transparency from Idiom to Policy.
Payment for participation in research—especially clinical research—is a common practice, but researchers often find themselves working in a “black hole” regarding payment. There are no well-described standards for decision-making on payment amounts and forms of payment, apart from the Belmont Report’s abstract warnings against exerting “coercion and undue influence” (HHS, 1979). Without tools to support decision-making in this area, payment decision practices tend to be subjective and based on personal experience; researchers with no experience in this area may make payment decisions for research participation based on available funds, personal notions, and guesswork of “what’s best.” Nonetheless, the authors know from personal experience that payment decisions can significantly impact studies at each step of the CONSORT process, from screening and enrollment to condition allocation and retention and, ultimately, data analysis and reporting (Altman et al., 2001). Emerging data on payment decision-making—although still limited—reveals a complex web of factors that drive payment amounts, including participant type, proximity to the study site, risks involved, procedure invasiveness, and the expectations of research participants themselves, which may be based on their experiences in other studies. Given the potential influence of these myriad factors on study participation, it is therefore surprising that to date there has been a relative absence of attention and transparency on what, how, when, and by whom participant payments are determined (Anderson and Brown, 2021). The prevailing worry about participant payments is that they could be coercive or cause undue influence on participants’ decisions to participate in research or undertake certain study procedures. More recently, however, ethicists have moved away from this paradigm to focus on the opposite issue: underpayment of people who participate in research, and the ethical principle of beneficence (Largent and Lynch, 2017). Although ethics committees do not typically consider payment in the risk/benefit ratio when reviewing research, participants may view payment as another benefit of research participation. Progress in the Science of Participant Payment