Department of Clinical Sciences, Temple University School of Medicine, Philadelphia, Pennsylvania, USA
Urban Health Collaborative, Drexel University School of Public Health, Philadelphia, Pennsylvania, USA.
J Med Ethics. 2022 Apr;48(4):261-265. doi: 10.1136/medethics-2020-106715. Epub 2021 Mar 10.
Financial compensation of research participants has been standard practice for centuries, however, there is an ongoing debate among researchers and ethicists regarding the ethical nature of this practice. While these debates develop ethical arguments and theories, they fail to incorporate input from those most affected by financial compensation: potential research participants.
To identify attitudes surrounding clinical research, participants of a long-standing cohort completed a one-time interview. Open-ended questions stimulated a participant-driven discussion surrounding medical research. Following a grounded theory methodology, 58 semistructured interview transcripts were coded, focusing on attitudes surrounding financial compensation of research participants.
Of the interviews coded, the majority of participants identified as Black/African American (n=44) and were women (n=40). Five major themes emerged. In support of financial compensation, participants felt that study participants should be compensated for time, effort and risk. However, participants were concerned that compensation may differentially impact low-income populations and entice them to hide potentially harmful side effects. Participants also mentioned that financial compensation may invalidate study results if participants knowingly provide false information to subvert inclusion/exclusion criteria.
The emergence of both positive and negative themes reiterates the complicated issue of providing financial compensation for study participation. While compensation as a motivator for research participation raises ethical concerns, participants discussed weighing the benefits with the risks in order to make an informed decision. To avoid paternalistic behaviours, research staff must allow potential research participants to review the available information and make the decision that best reflects their wishes.
对研究参与者进行经济补偿是几个世纪以来的标准做法，但研究人员和伦理学家一直在争论这种做法的伦理性质。虽然这些辩论提出了伦理论点和理论，但它们没有纳入受经济补偿影响最大的人的意见：潜在的研究参与者。
为了确定围绕临床研究的态度，一个长期队列的参与者完成了一次访谈。开放式问题激发了一次由参与者驱动的关于医学研究的讨论。采用扎根理论方法，对 58 份半结构化访谈记录进行了编码，重点关注研究参与者经济补偿的态度。
在所编码的访谈中，大多数参与者被认定为黑人/非裔美国人（n=44）和女性（n=40）。出现了五个主要主题。支持经济补偿的参与者认为，研究参与者应该因时间、努力和风险得到补偿。然而，参与者担心补偿可能会对低收入人群产生不同的影响，并诱使他们隐瞒潜在的有害副作用。参与者还提到，经济补偿可能会使研究结果无效，如果参与者故意提供虚假信息来规避纳入/排除标准。
积极和消极主题的出现重申了为研究参与提供经济补偿这一复杂问题。虽然补偿作为研究参与的激励因素引发了伦理问题，但参与者讨论了权衡收益与风险，以便做出明智的决定。为了避免家长式作风，研究人员必须允许潜在的研究参与者审查可用信息，并做出最能反映他们意愿的决定。
