为增加遗传研究和个性化医学中美洲原住民代表性而向研究人员提出的建议。
Recommendations to researchers for aiding in increasing American Indian representation in genetic research and personalized medicine.
机构信息
Division of Environmental Health Sciences, School of Public Health, University of Minnesota.
Masonic Cancer Center, University of Minnesota.
出版信息
Per Med. 2021 Jan;18(1):67-74. doi: 10.2217/pme-2020-0130. Epub 2020 Dec 17.
Abstract
Increasing American Indian/Alaska Native (AI/AN) representation in genetic research is critical to ensuring that personalized medicine discoveries do not widen AI/AN health disparities by only benefiting well-represented populations. One reason for the under-representation of AIs/ANs in research is warranted research distrust due to abuse of some AI/AN communities in research. An approach to easing the tension between protecting AI/AN communities and increasing the representation of AI/AN persons in genetic research is community-based participatory research. This approach was used in a collaboration between a tribe and academic researchers in efforts to increase AI/AN participation in genetic research. From the lessons learned, the authors propose recommendations to researchers that may aid in conducting collaborative and respectful research with AI/AN tribes/communities and ultimately assist in increasing representation of AIs/ANs in personalized medicine discoveries.
摘要
增加美洲印第安人/阿拉斯加原住民（AI/AN）在遗传研究中的代表性对于确保个性化医学发现不会通过仅使代表性良好的人群受益而扩大 AI/AN 健康差距至关重要。AI/AN 在研究中代表性不足的一个原因是由于对一些 AI/AN 社区的研究滥用而导致的有理由的研究不信任。一种缓解保护 AI/AN 社区与增加遗传研究中 AI/AN 人员代表性之间紧张关系的方法是基于社区的参与式研究。这种方法用于一个部落和学术研究人员之间的合作，以努力增加 AI/AN 对遗传研究的参与。从经验中，作者提出了一些建议，供研究人员参考，这些建议可能有助于与 AI/AN 部落/社区进行合作和尊重的研究，并最终有助于增加 AI/AN 在个性化医学发现中的代表性。
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