Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.
Eur J Hum Genet. 2021 Feb;29(2):231-240. doi: 10.1038/s41431-020-00738-0. Epub 2020 Oct 3.
Many research sponsors and genetic researchers agree that some medically relevant genetic findings should be offered to participants. The scarcity of research specific to returning genetic results related to psychiatric disorders hinders the ability to develop ethically justified and empirically informed guidelines for responsible return of results for these conditions. We surveyed 407 psychiatric genetics researchers from 39 countries to examine their perceptions of challenges to returning individual results and views about best practices for the process of offering and returning results. Most researchers believed that disclosure of results should be delayed if a patient-participant is experiencing significant psychiatric symptoms. Respondents felt that there is little research on the impact of returning results to participants with psychiatric disorders and agreed that return of psychiatric genetics results to patient-participants may lead to discrimination by insurance companies or other third parties. Almost half of researchers believed results should be returned through a participant's treating psychiatrist, but many felt that clinicians lack knowledge about how to manage genetic research results. Most researchers thought results should be disclosed by genetic counselors or medical geneticists and in person; however, almost half also supported disclosure via telemedicine. This is the first global survey to examine the perspectives of researchers with experience working with this patient population and with these conditions. Their perspectives can help inform the development of much-needed guidelines to promote responsible return of results related to psychiatric conditions to patients with psychiatric disorders.
许多研究赞助商和遗传研究人员都认为,应该向参与者提供一些与医学相关的遗传发现。由于缺乏专门针对与精神障碍相关的遗传结果回报的研究,这阻碍了制定与这些情况的负责任结果回报相关的、有伦理依据和经验依据的指南的能力。我们调查了来自 39 个国家的 407 名精神遗传学研究人员,以了解他们对个体结果回报的挑战的看法,以及对提供和回报结果的最佳实践的看法。大多数研究人员认为,如果患者参与者出现明显的精神症状,就应该延迟披露结果。受访者认为,关于向有精神障碍的参与者回报结果的影响的研究很少,并且一致认为将精神遗传学结果回报给患者参与者可能会导致保险公司或其他第三方的歧视。近一半的研究人员认为结果应该通过参与者的主治精神科医生来回报,但许多人认为临床医生缺乏管理遗传研究结果的知识。大多数研究人员认为结果应由遗传咨询师或医学遗传学家亲自披露;然而,近一半的人也支持通过远程医疗进行披露。这是首次对有经验处理此类患者群体和此类疾病的研究人员的观点进行调查。他们的观点可以帮助为促进负责任地向有精神障碍的患者回报与精神障碍相关的结果制定急需的指南提供信息。