Genetic research with Indigenous Peoples: perspectives on governance and oversight in the US.
Genetic research with Indigenous Peoples: perspectives on governance and oversight in the US.
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DOI：
10.3389/frma.2023.1286948
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发表时间：
2023
影响因子：
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通讯作者：
Carroll, Stephanie Russo
中科院分区：
文献类型：
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作者：
Garrison, Nanibaa' A;Carroll, Stephanie Russo
土著人民越来越多地与其国家的公民一起对基因组研究进行管理和监督，这就提出了如何最好地在美洲印第安人、阿拉斯加原住民和夏威夷原住民与研究人员之间执行研究监管的问题。使用社区参与的研究方法，我们进行了42个半结构化的采访，部落领导人，临床医生，研究人员，政策制定者和部落研究审查委员会成员对他们的观点与遗传学研究有关的伦理问题与土著人民在美国。我们报告的调查结果涉及（1）对土著治理的考虑，（2）维护主权的机构关系，（3）对研究批准的期望，以及（4）制定土著治理的协议。与会者描述了对不同的监督方式、土著人民与研究人员之间的关系和协议以及为加强基因组数据的现有治理而需要解决的差距的关切。研究结果将最终指导土著人民的政策制定和新战略的制定，以加强对研究的监督，促进在道德和文化上适当的研究。
Indigenous Peoples are increasingly exerting governance and oversight over genomic research with citizens of their nations, raising questions about how best to enforce research regulation between American Indian, Alaska Native, and Native Hawaiian peoples and researchers. Using a community-engaged research approach, we conducted 42 semi-structured interviews with Tribal leaders, clinicians, researchers, policy makers, and Tribal research review board members about their perspectives on ethical issues related to genetics research with Indigenous Peoples in the US. We report findings related to (1) considerations for Indigenous governance, (2) institutional relationships upholding sovereignty, (3) expectations for research approvals, and (4) agreements enacting Indigenous governance. Participants described concerns about different ways of exerting oversight, relationships and agreements between Indigenous Peoples and researchers, and gaps that need to be addressed to strengthen existing governance of genomic data. The results will ultimately guide policy-making and development of new strategies for Indigenous Peoples to enforce oversight in research to promote ethically and culturally appropriate research.