Ethical and public health implications of genetic testing for suicide risk: family and survivor perspectives.

Ethical and public health implications of genetic testing for suicide risk: family and survivor perspectives.
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基因检测对自杀风险的伦理和公共卫生影响:家庭和幸存者的观点。

DOI:
10.1038/s41436-020-00982-1
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发表时间:
2021-03
期刊:
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子:
--
通讯作者:
Coon H
Coon H
中科院分区:
其他
文献类型:
--
作者:
Kious BM;Docherty AR;Botkin JR;Brown TR;Francis LP;Gray DD;Keeshin BR;Stark LA;Witte B;Coon H

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自杀死亡的遗传率估计约为50%。研究可能很快允许计算自杀死亡的多基因风险评分(PRS),这可以直接向消费者销售。这引发了道德上的担忧。了解消费者将如何利用这些信息是当务之急。我们进行了三个焦点小组,包括自杀未遂幸存者(“幸存者”)和自杀死者的家庭成员(“家庭成员”),以评估他们对这项技术的反应。问题集中于减贫战略结果的积极和消极影响。定性研究方法用于总结工作室的结果。8名幸存者和13名家属参加了活动。两组都假设了自杀预防措施的好处,包括预防和减少耻辱感。他们担心的问题从耻辱增加到不利的心理影响。他们建议自杀预防措施应该伴随着广泛的教育和咨询。参与者没有出现不良反应。对社区利益相关者来说,自杀风险基因检测的许多伦理、法律和社会影响是非常突出的。我们的参与者希望自杀PRS能够在个人和社区层面上产生显著的效益,但也担心在几个领域的影响,包括耻辱,获得保险和就业,以及增加焦虑和抑郁。
Death from suicide has an estimated heritability of ~50%. Research may soon allow calculation of polygenic risk scores (PRS) for suicide death, which could be marketed directly to consumers. This raises ethical concerns. Understanding how consumers will utilize this information is urgent. We conducted three focus groups involving suicide attempt survivors (“survivors”) and family members of suicide decedents (“family members”) to gauge their reactions to this technology. Questions focused on positive and negative implications of PRS results. Qualitative research methods were used to summarize studio results. Eight survivors and 13 family members participated. Both groups postulated benefits of suicide PRS, including prevention and reduced stigma. Their concerns ranged from increased stigma to adverse psychological effects. They suggested that suicide PRS should be accompanied by extensive education and counseling. Participants experienced no adverse effects. Many ethical, legal, and social implications of genetic testing for suicide risk are highly salient to community stakeholders. Our participants hoped that suicide PRS could have significant individual and community-level benefits, but had concerns about effects in several domains, including stigma, access to insurance and employment, and increased anxiety and depression.
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