Return of results in a global survey of psychiatric genetics researchers: practices, attitudes, and knowledge.
Return of results in a global survey of psychiatric genetics researchers: practices, attitudes, and knowledge.
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DOI：
10.1038/s41436-020-00986-x
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发表时间：
2021-03
期刊：
影响因子：
--
通讯作者：
Pereira S
中科院分区：
文献类型：
--
作者：
Lázaro-Muñoz G;Torgerson L;Pereira S
患者-精神病学遗传学研究的参与者可能面临与基因研究结果返回相关的负面心理社会影响的风险增加。检查精神病学遗传学研究人员的返回结果、实践和观点可以帮助制定经验知情和伦理合理的指南。对来自39个国家的407名精神病学遗传学研究人员进行了一项调查，以检查目前的结果回报做法、态度和知识。大多数受访者(61%)报告说，他们的研究产生了与医学相关的基因组发现。尽管24%的参与者已将结果退回给个人参与者，但参与决定退回结果的人中有52%计划退回或继续退回结果。受访者支持提供与精神障碍有关的“医学上可行的”结果(82%)，大多数人同意应该提供亨廷顿氏症(71%)和阿尔茨海默病(%)的非医学上可诉讼的风险。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。尽管计划退货，但只有14%的研究人员同意有足够的指导方针来退货，59%的人认为他们对如何管理退货流程的了解很差。精神病学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导方针。
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. A survey of 407 psychiatric genetics researchers from 39 countries was conducted to examine current return of results practices, attitudes, and knowledge. 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’s (71%) and Alzheimer’s 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. Psychiatric genetics researchers support returning a wide range of results to patient-participants, but they lack adequate knowledge and guidelines.
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