Genomic Research and American Indian Tribal Communities in Oklahoma: Learning From Past Research Misconduct and Building Future Trusting Partnerships
Genomic Research and American Indian Tribal Communities in Oklahoma: Learning From Past Research Misconduct and Building Future Trusting Partnerships
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DOI：
10.1093/aje/kwz062
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发表时间：
2019-07-01
影响因子：
5
通讯作者：
Wharton，David F.
中科院分区：
文献类型：
--
作者：
Chadwick，Jennifer Q.;Copeland，Kenneth C.;Wharton，David F.
几十年来，研究不端行为和随之而来的伤害一直对美国印第安人/阿拉斯加原住民社区造成影响。为了保护他们的人民和文化，并保持对研究的监督，许多土著社区建立了部落健康研究和机构审查委员会。青少年和青年2型糖尿病的治疗选择（今天）研究展示了与俄克拉荷马州部落国家和学术研究人员的成功，信任的研究合作。2006年，TODAY研究的研究人员提议修改研究方案，从参与者中收集生物标本进行基因组分析和无限期储存。与之合作的美洲印第安部落国家选择不参与基因组学收集和储存库的提议。原因包括：1）保护文化价值观，2）对社区匿名性的担忧，3）对部落服务资格的潜在威胁，4）广泛的知情同意语言，以及5）数据访问和使用的模糊定义。这些国家认为，拟议中的基因组学分析对他们的人民和国家带来了损害的风险，却没有明显的好处。自2006年的提案和基因组学研究的进展以来，俄克拉荷马州的许多部落社区认识到基因组研究的潜在好处，正在制定关于监督/获取数据和生物标本的政策，以减轻风险，并为成员和社区提供参与安全和有意义的基因组研究的机会。
Research misconduct and consequential harms have been inflicted upon American Indian/Alaska Native communities for decades. To protect their people and culture and to retain oversight over research, many Native communities have established tribal health research and institutional review boards. The Treatment Options for Type 2 Diabetes in Adolescents and Youth (TODAY) Study showcases a successful, trusting research collaboration with tribal nations and academic investigators in Oklahoma. In 2006, the TODAY Study investigators proposed a modification of the study protocol to collect biological specimens from participants for genomic analyses and indefinite storage. Partnering American Indian tribal nations elected not to participate in the genomics collection and repository proposal. Reasons included 1) protection of cultural values, 2) concerns regarding community anonymity, 3) a potential threat to tribal services eligibility, 4) broad informed consent language, and 5) vague definitions of data access and usage. The nations believed the proposed genomics analyses presented a risk of harm to their people and nations without clear benefit. Since the 2006 proposal and the advancement of genomics research, many tribal communities in Oklahoma, appreciating the potential benefits of genomic research, are developing policies regarding oversight of/access to data and biological specimens to mitigate risks and provide members and communities with opportunities to participate in safe and meaningful genomic research.