MacDuffie Katherine E, Wilfond Benjamin S, Kraft Stephanie A
Assistant professor at the Treuman Katz Center for Pediatric Bioethics and Palliative Care in the Seattle Children's Research Institute and Department of Pediatrics at the University of Washington School of Medicine.
Professor at the Treuman Katz Center for Pediatric Bioethics and Palliative Care in the Seattle Children's Research Institute and Department of Pediatrics at the University of Washington School of Medicine.
Ethics Hum Res. 2025 Jul-Aug;47(4):29-36. doi: 10.1002/eahr.60009.
Open science initiatives, intended to democratize access to research products, have made steady progress in shifting the global science culture toward practices like preregistration and data sharing. However, current open science efforts have not yet addressed the special obligation to ensure that research results are made accessible to the portion of the general population who contribute most directly to scientific advances: research participants. In this article, we explore the ethical obligation to communicate aggregate results to research participants and consider elements of open science infrastructure that could be amended for this purpose. We consider open questions for implementation related to the methods, timing, potential harms, oversight, and incentives for communicating aggregate results and pose solutions that could, following the example of open science initiatives, succeed in nudging investigators to reciprocate the efforts of research participants by sharing the scientific findings they helped to advance.
开放科学倡议旨在使获取研究成果的机会民主化，在将全球科学文化转向预注册和数据共享等实践方面取得了稳步进展。然而，当前的开放科学努力尚未解决一项特殊义务，即确保让对科学进步贡献最为直接的普通人群——研究参与者能够获取研究结果。在本文中，我们探讨了向研究参与者传达汇总结果的伦理义务，并考虑了可为此目的进行修正的开放科学基础设施要素。我们思考了与传达汇总结果的方法、时机、潜在危害、监督及激励措施相关的实施方面的开放性问题，并提出了解决方案，这些方案可以效仿开放科学倡议的范例，成功促使研究人员通过分享他们助力推进的科学发现来回报研究参与者的付出。
