An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation
An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation
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DOI：
10.1371/journal.pone.0229540
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发表时间：
2020-03-16
期刊：
影响因子：
3.7
通讯作者：
Spicer, Paul G.
中科院分区：
文献类型：
--
作者：
Hiratsuka, Vanessa Y.;Beans, Julie A.;Spicer, Paul G.
随着基因检测技术的进步，基因检测将成为初级保健机构的标准做法。基因研究、测试和结果返回是复杂的主题，在制定政策实施过程中需要来自阿拉斯加原住民和美国印第安人（ANAI）社区的投入。这项研究与ANAI初级保健患者进行了一天半的公开讨论，以引出基因研究、测试和结果返回的价值观念。与会者强调，有必要在遗传学研究、测试和返回结果以增强个人权能和改善健康的可能性与使个人和社区遭受隐私侵犯、歧视和情感伤害的可能性之间取得平衡。公众审议受到了这组参与者的欢迎，并引发了关于基因研究，测试和结果返回的复杂主题的丰富讨论。
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.