Kraft Stephanie A, Mittendorf Kathleen F
Hastings Cent Rep. 2024 Dec;54 Suppl 2:S73-S83. doi: 10.1002/hast.4932.
Scientific data-sharing and open science initiatives are increasingly important mechanisms for advancing the impact of genomic research. These mechanisms are being implemented as growing attention is paid to the need to improve the inclusion of research participants from marginalized and underrepresented groups. Together, these efforts aim to promote equitable advancements in genomic medicine. However, if not guided by community-informed protections, these efforts may harm the very participants and communities they aim to benefit. This essay examines potential benefits and harms of open science and explores how to advance a more just vision of open science in genomics. Drawing on relational ethics frameworks, we argue that researchers should consider their obligations to participants as well as the broader communities that are impacted by their research. We propose eight strategies to provide a foundation of practical steps for researchers to reduce the possibility of harms stemming from open science and to work toward genomic justice.
科学数据共享和开放科学倡议日益成为提升基因组研究影响力的重要机制。随着人们越来越关注改善来自边缘化和代表性不足群体的研究参与者的纳入情况，这些机制正在得到实施。这些努力共同旨在促进基因组医学的公平进步。然而，如果没有以社区知情保护为指导，这些努力可能会伤害到它们旨在造福的参与者和社区。本文探讨了开放科学的潜在益处和危害，并探索如何在基因组学领域推进更公正的开放科学愿景。借鉴关系伦理框架，我们认为研究人员应考虑他们对参与者以及受其研究影响的更广泛社区的义务。我们提出八项策略，为研究人员提供实际步骤的基础，以减少开放科学带来危害的可能性，并朝着基因组正义努力。
