Department of Bioethics and Humanities, UW School of Medicine, Seattle, WA.
Department of Bioethics and Humanities, UW School of Medicine, Seattle, WA.
Genet Med. 2022 Mar;24(3):622-630. doi: 10.1016/j.gim.2021.11.003. Epub 2021 Nov 30.
Amid calls for greater diversity in precision medicine research, the perspectives of Indigenous people have been underexplored. Our goals were to understand tribal leaders' views regarding the potential benefits and risks of such research, explore its priority for their communities, and identify the policies and safeguards they consider essential. This article reports on the participants' perspectives regarding governance and policy, stewardship and sharing of information and biospecimens, and informed consent.
After informal local dialogs with 21 tribal leaders, we convened a 2.5-day deliberation with tribal leaders (N = 10) in Anchorage, Alaska, in June 2019 using a combination of small group and plenary discussion, ranking, and voting exercises to explore the perspectives on precision medicine research.
Tribal sovereignty was central to participants' ideas about precision medicine research. Although views were generally positive, provided that the appropriate controls were in place, some kinds of research were deemed unacceptable, and the collection of certain biospecimens was rejected by some participants. Differences were observed regarding the acceptability of broad consent.
Tribal leaders in this study were generally supportive of precision medicine research, with the caveat that tribal oversight is essential for the establishment of research repositories and the conduct of research involving Indigenous participants.
在呼吁增加精准医学研究多样性的背景下，原住民的观点尚未得到充分探索。我们的目标是了解部落领袖对这类研究的潜在益处和风险的看法，探讨其对社区的优先性，并确定他们认为至关重要的政策和保障措施。本文报告了参与者对治理和政策、信息和生物样本的管理和共享以及知情同意的看法。
在与 21 位部落领袖进行非正式的当地对话之后，我们于 2019 年 6 月在阿拉斯加安克雷奇举行了为期两天半的部落领袖会议（N=10），采用小组讨论和全体讨论、排名和投票练习相结合的方式，探讨了对精准医学研究的看法。
部落主权是参与者对精准医学研究的核心观点。尽管观点普遍是积极的，但前提是要有适当的控制措施，一些类型的研究被认为是不可接受的，而一些参与者则拒绝收集某些生物样本。对于广泛同意的可接受性存在差异。
本研究中的部落领袖普遍支持精准医学研究，但前提是必须进行部落监督，以建立研究资料库并开展涉及原住民参与者的研究。
