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Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers.
Genetics in Medicine ( IF 8.8 ) Pub Date : 2020-08-25 , DOI: 10.1038/s41436-020-0926-y
Vanessa Y Hiratsuka 1 , Michael J Hahn 2 , R Brian Woodbury 1 , Sara Chandros Hull 2 , David R Wilson 2 , Vence L Bonham 2 , Denise A Dillard 1 , , Jaedon P Avey 1 , Andrea C Beckel-Mitchener 2 , Juliana Blome 2 , Katrina Claw 3 , Elizabeth D Ferucci 4 , Francine C Gachupin 5 , Armen Ghazarian 2 , Lucia Hindorff 2 , Sonya Jooma 2 , Susan B Trinidad 6 , Jennifer Troyer 2 , Hina Walajahi 2
Affiliation  

Meaningful engagement of Alaska Native (AN) tribes and tribal health organizations is essential in the conduct of socially responsible and ethical research. As genomics becomes increasingly important to advancements in medicine, there is a risk that populations not meaningfully included in genomic research will not benefit from the outcomes of that research. AN people have historically been underrepresented in biomedical research; AN underrepresentation in genomics research is compounded by mistrust based on past abuses, concerns about privacy and data ownership, and cultural considerations specific to this type of research. Working together, the National Human Genome Research Institute and two Alaska Native health organizations, Southcentral Foundation and the Alaska Native Health Board, cosponsored a workshop in July 2018 to engage key stakeholders in discussion, strengthen relationships, and facilitate partnership and consideration of participation of AN people in community-driven biomedical and genomic research. AN priorities related to translation of genomics research to health and health care, return of genomic results, design of research studies, and data sharing were discussed. This report summarizes the perspectives that emerged from the dialogue and offers considerations for effective and socially responsible genomic research partnerships with AN communities.



中文翻译:

阿拉斯加原住民基因组研究:阿拉斯加原住民领导人、联邦工作人员和生物医学研究人员的观点。

阿拉斯加原住民 (AN) 部落和部落卫生组织的有意义的参与对于开展具有社会责任感和伦理道德的研究至关重要。随着基因组学对医学进步变得越来越重要,没有有意义地纳入基因组研究的人群有可能无法从该研究的结果中受益。历史上,人类在生物医学研究中的代表性不足;基因组学研究中代表性不足的情况因基于过去滥用行为的不信任、对隐私和数据所有权的担忧以及此类研究特有的文化考虑而加剧。国家人类基因组研究所和两个阿拉斯加原住民健康组织、Southcentral Foundation 和阿拉斯加原住民健康委员会携手合作,2018 年 7 月共同主办了一次研讨会,以让主要利益相关者参与讨论,加强关系,促进伙伴关系和考虑 AN 人参与社区驱动的生物医学和基因组研究。讨论了与将基因组学研究转化为健康和保健、基因组结果返回、研究设计和数据共享相关的优先事项。本报告总结了对话中出现的观点,并为与 AN 社区建立有效和对社会负责的基因组研究伙伴关系提供了考虑。讨论了基因组结果的返回、研究设计和数据共享。本报告总结了对话中出现的观点,并为与 AN 社区建立有效和对社会负责的基因组研究伙伴关系提供了考虑。讨论了基因组结果的返回、研究设计和数据共享。本报告总结了对话中出现的观点,并为与 AN 社区建立有效和对社会负责的基因组研究伙伴关系提供了考虑。

更新日期:2020-08-25
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