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Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers
European Journal of Human Genetics ( IF 5.2 ) Pub Date : 2020-10-03 , DOI: 10.1038/s41431-020-00738-0
Gabriel Lázaro-Muñoz 1 , Laura Torgerson 1 , Hadley Stevens Smith 1 , Stacey Pereira 1
Affiliation  

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.



中文翻译:

对精神病遗传学研究人员的国际调查中返回结果的最佳实践的看法

许多研究赞助商和遗传研究人员都同意应该向参与者提供一些与医学相关的遗传发现。专门针对返回与精神疾病相关的遗传结果的研究的稀缺性阻碍了制定道德合理且经验丰富的指导方针以负责任地返回这些条件的结果的能力。我们调查了来自 39 个国家/地区的 407 名精神病学遗传学研究人员,以检查他们对返回个人结果的挑战的看法以及对提供和返回结果过程的最佳实践的看法。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,则应延迟披露结果。受访者认为,关于将结果返回给患有精神疾病的参与者的影响的研究很少,并同意将精神遗传学结果返回给患者参与者可能会导致保险公司或其他第三方的歧视。几乎一半的研究人员认为结果应该通过参与者的治疗精神科医生返回,但许多人认为临床医生缺乏如何管理基因研究结果的知识。大多数研究人员认为结果应该由遗传咨询师或医学遗传学家亲自披露;然而,几乎一半的人也支持通过远程医疗进行披露。这是第一项全球调查,旨在检验具有与这些患者群体和这些疾病一起工作经验的研究人员的观点。

更新日期:2020-10-04
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