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阿拉斯加原住民社区对基因研究、检测和结果回报的看法:公众审议的结果。

An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation.

机构信息

Research Department, Southcentral Foundation, Anchorage, Alaska, United States of America.

Center for Applied Social Research, University of Oklahoma, Norman, Oklahoma, United States of America.

出版信息

PLoS One. 2020 Mar 16;15(3):e0229540. doi: 10.1371/journal.pone.0229540. eCollection 2020.

Abstract

As genetic testing technology advances, genetic testing will move into standard practice in the primary care setting. Genetic research, testing, and return of results are complex topics that require input from Alaska Native and American Indian (ANAI) communities as policies are developed for implementation. This study employed a day and half long public deliberation with ANAI primary care patients to elicit value-laden views of genetic research, testing, and return of results. Participants emphasized the need for a balance between the potential for genetics research, testing, and return of results to empower individuals and improve health with the potential to expose individuals and communities to privacy breaches, discrimination, and emotional harms. Public deliberation was well received by this group of participants and elicited rich discussion on the complex topic of genetic research, testing, and return of results.

摘要

随着基因检测技术的进步,基因检测将在初级保健环境中成为标准实践。遗传研究、检测和结果回报是复杂的主题,需要阿拉斯加原住民和美洲印第安人(ANAI)社区的投入,因为正在制定实施政策。这项研究采用了为期一天半的公共审议,让 ANAI 初级保健患者参与,以引出对遗传研究、检测和结果回报的有价值的观点。参与者强调,需要在遗传研究、检测和结果回报的潜力之间取得平衡,以使个人获得赋权并改善健康,同时又有可能使个人和社区面临隐私侵犯、歧视和情感伤害的风险。公众审议受到了这群参与者的欢迎,并就遗传研究、检测和结果回报的复杂主题引发了深入讨论。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/bf15/7075569/a1ecc43f0a23/pone.0229540.g001.jpg

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