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Genomic Research and American Indian Tribal Communities in Oklahoma: Learning From Past Research Misconduct and Building Future Trusting Partnerships

机译:基因组研究和俄克拉荷马州的美洲印第安人部落社区:从过去的研究不端行为中学习并建立未来的信任伙伴关系

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摘要

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.
机译:数十年来,研究不当行为和随之而来的伤害已造成美洲印第安人/阿拉斯加土著社区。为了保护其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。青少年和青少年2型糖尿病的治疗选择(今日)研究展示了与俄克拉荷马州的部落国家和学术研究人员的成功且值得信赖的研究合作。在2006年,TODAY研究的研究人员提出了对研究方案的修改,以从参与者那里收集生物样本进行基因组分析和无限期保存。美洲印第安部落国家的合作伙伴选择不参加基因组收集和存储库提案。原因包括1)保护文化价值,2)关于社区匿名性的担忧,3)对部落服务资格的潜在威胁,4)广泛的知情同意语言和5)数据访问和使用的模糊定义。各国认为,拟议的基因组学分析存在对其人民和国家造成伤害的风险,但没有明显的利益。自从2006年提案和基因组学研究的发展以来,俄克拉荷马州的许多部落社区意识到基因组学研究的潜在好处,正在制定有关监督/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的机会在安全且有意义的基因组研究中。

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