Purpose

Patient-participants in psychiatric genetics research may be at an increased risk for negative psychosocial impacts related to the return of genetic research results. Examining psychiatric genetics researchers’ return of results practices and perspectives can aid the development of empirically informed and ethically sound guidelines.

Methods

A survey of 407 psychiatric genetics researchers from 39 countries was conducted to examine current return of results practices, attitudes, and knowledge.

Results

Most respondents (61%) reported that their studies generated medically relevant genomic findings. Although 24% have returned results to individual participants, 52% of those involved in decisions about return of results plan to return or continue to return results. Respondents supported offering “medically actionable” results related to psychiatric disorders (82%), and the majority agreed non–medically actionable risks for Huntington (71%) and Alzheimer disease (64%) should be offered. About half (49%) of respondents supported offering reliable polygenic risk scores for psychiatric conditions. Despite plans to return, only 14% of researchers agreed there are adequate guidelines for returning results, and 59% rated their knowledge about how to manage the process for returning results as poor.

Conclusion

Psychiatric genetics researchers support returning a wide range of results to patient-participants, but they lack adequate knowledge and guidelines.

中文翻译：

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精神科遗传学研究人员全球调查结果返回：实践、态度和知识

目的

精神科遗传学研究的患者参与者可能面临与基因研究结果返回相关的负面社会心理影响的风险增加。检查精神科遗传学研究人员的结果返回实践和观点可以帮助制定经验丰富且道德合理的指南。

方法

对来自 39 个国家的 407 名精神遗传学研究人员进行了一项调查，以检查当前结果、实践、态度和知识的回报。

结果

大多数受访者 (61%) 报告说，他们的研究产生了医学相关的基因组发现。尽管 24% 的参与者已将结果返回给个人参与者，但参与结果返回决策的参与者中有 52% 计划返回或继续返回结果。受访者支持提供与精神疾病相关的“医学上可行”的结果（82%），大多数人同意应提供亨廷顿病（71%）和阿尔茨海默病（64%）的非医学上可行的风险。大约一半（49%）的受访者支持为精神疾病提供可靠的多基因风险评分。尽管计划返回，但只有 14% 的研究人员同意有足够的返回结果指南，59% 的研究人员认为他们对如何管理结果返回流程的了解很差。

结论

精神科遗传学研究人员支持向患者参与者返回广泛的结果，但他们缺乏足够的知识和指南。