Duenas Devan M, Weiss Elliott Mark, Wilfond Benjamin S, Kraft Stephanie A
Seattle Children's Research Institute, Treuman Katz Center for Pediatric Bioethics and Palliative Care, Seattle, WA, USA.
Department of Pediatrics, Division of Bioethics and Palliative Care, University of Washington School of Medicine, Seattle, WA, USA.
J Clin Transl Sci. 2024 Nov 4;8(1):e204. doi: 10.1017/cts.2024.650. eCollection 2024.
Researchers and research organizations acknowledge the importance of paying research participants but often overlook the process of providing participant payments as a locus for improving equity and inclusion in clinical research. In this conceptual paper, we argue that participants' lived experiences and social context should be recognized and respected when developing these processes.
We consider how participant payment processes that require specific payment types, delay the timing of payment, or require sharing sensitive information may impose barriers to equitable research. Building on findings from empirical research of participants' perspectives on respect in research and a relational ethics framework of person-oriented research ethics, we explore how researchers and research organizations can better demonstrate respect through the research participation payment process.
We propose five considerations for demonstrating respect when providing payment: (1) practice cultural humility, (2) be mindful of socioeconomic factors, (3) be flexible, (4) be transparent, and (5) maintain open communication. These considerations are intended to address the lack of existing ethical guidance around the process for participant payments and promote more inclusive clinical research. We provide a set of sample questions for research teams to consider how they could modify their payment processes to better demonstrate respect.
By better demonstrating respect for participants when providing payment, researchers can work toward ensuring that their research procedures are more inclusive, respond to the needs of diverse communities, and result in more equitable relationships with participants.
研究人员和研究机构承认向研究参与者支付报酬的重要性，但往往忽视了提供参与者报酬这一过程，而这一过程是改善临床研究公平性和包容性的关键所在。在这篇概念性论文中，我们认为在制定这些流程时，应认识并尊重参与者的生活经历和社会背景。
我们探讨了要求特定支付类型、延迟支付时间或要求分享敏感信息的参与者支付流程可能如何对公平研究造成障碍。基于对参与者在研究中对尊重的看法的实证研究结果以及以人为本的研究伦理的关系伦理框架，我们探索研究人员和研究机构如何通过研究参与支付流程更好地展现尊重。
我们提出了在支付报酬时展现尊重的五点考量：（1）践行文化谦逊，（2）关注社会经济因素，（3）保持灵活性，（4）做到透明，（5）保持开放沟通。这些考量旨在解决围绕参与者支付流程缺乏现有伦理指导的问题，并促进更具包容性的临床研究。我们为研究团队提供了一组示例问题，供其思考如何修改支付流程以更好地展现尊重。
通过在支付报酬时更好地展现对参与者的尊重，研究人员可以努力确保其研究程序更具包容性，回应不同社区的需求，并与参与者建立更公平的关系。
