Purpose

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.

Methods

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.

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.

Conclusion

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.

中文翻译：

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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

目的

自杀死亡的遗传率估计约为 50%。研究可能很快就会允许计算自杀死亡的多基因风险评分（PRS），这可以直接销售给消费者。这引发了伦理问题。了解消费者将如何利用这些信息是当务之急。

方法

我们开展了三个焦点小组，涉及自杀未遂幸存者（“幸存者”）和自杀死者家属（“家庭成员”），以评估他们对这项技术的反应。问题集中于 PRS 结果的正面和负面影响。定性研究方法用于总结工作室结果。

结果

8 名幸存者和 13 名家庭成员参加。两组都假设自杀 PRS 的好处，包括预防和减少耻辱感。他们的担忧范围从增加污名到不利的心理影响。他们建议自杀性 PRS 应该伴随着广泛的教育和咨询。参与者没有受到不良影响。

结论

基因检测对自杀风险的许多伦理、法律和社会影响对社区利益相关者来说非常重要。我们的参与者希望自杀性 PRS 可以在个人和社区层面带来显着的益处，但他们担心在几个领域的影响，包括耻辱、获得保险和就业的机会，以及增加的焦虑和抑郁。