ACCESS AND MANAGEMENT: INDIGENOUS PERSPECTIVES ON GENOMIC DATA SHARING
ACCESS AND MANAGEMENT: INDIGENOUS PERSPECTIVES ON GENOMIC DATA SHARING
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DOI：
10.18865/ed.29.s3.659
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发表时间：
2019-12-01
影响因子：
3.2
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.;Barton, Krysta S.;Carroll, Stephanie Russo
随着基因组研究人员被鼓励参与广泛的基因组、数据共享，美洲印第安人/阿拉斯加原住民/夏威夷原住民(Al/An/NH)领导人对数据和生物谱的所有权提出了质疑，并对新出现的挑战和对部落主权的潜在威胁表示担忧。采用社区参与的研究方法，我们对部落首领、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进行了42次半结构化访谈，询问他们对Al/An/NH社区中与遗传学相关的伦理问题的看法。我们报告与基因研究、数据共享和设想加强数据监督和管理的视角有关的调查结果。与会者尤其对住房数据的数据共享、基础设施和后勤的不同模式以及谁应该有权访问数据表示关切。这些成果将最终指导各部落制定政策和制定指导方针和新战略，以推动研究议程，并促进在伦理和文化上适当的研究。
As genomic researchers are encouraged to engage in broad genomic, data sharing, American Indian/Alaska Native/Native Hawaiian (Al/AN/NH) leaders have raised questions about ownership of data and biospecimens and concerns over emerging challenges and potential threats to tribal sovereignty. 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 in Al/AN/NH communities. We report findings related to perspectives on genetic research, data sharing, and envisioning stronger oversight and management of data. In particular, participants voiced concerns about different models of data sharing, infrastructure and logistics for housing data, and who should have authority to grant access to data. The results will ultimately guide policy-making and the creation of guidelines and new strategies for tribes to drive the research agenda and promote ethically and culturally appropriate research.