Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers.
Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers.
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DOI：
10.1038/s41431-020-00738-0
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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;Smith HS;Pereira S
许多研究赞助者和遗传学研究人员同意，应向参与者提供一些医学相关的遗传学发现。缺乏专门返回与精神疾病相关的遗传结果的研究，阻碍了制定道德上合理和经验上知情的指导方针，以负责任地返回这些条件的结果。我们调查了来自39个国家的407名精神病遗传学研究人员，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，如果患者参与者正在经历显着的精神症状，结果的披露应该推迟。受访者认为，几乎没有研究返回结果的影响，参与者与精神疾病，并同意返回精神病遗传学结果的患者参与者可能会导致歧视的保险公司或其他第三方。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遗传研究结果的知识。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披露。这是第一次全球调查，以检查研究人员的观点与这些患者群体和这些条件的工作经验。他们的观点可以帮助制定急需的指导方针，以促进负责任地将与精神疾病相关的结果返还给精神障碍患者。
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.
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DOI：
10.1038/gim.2013.73
发表时间：
2013-07
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
通讯作者：
--
影响因子：
3.4
作者：
Clayton, Ellen Wright;Evans, Barbara J.;Rothstein, Mark A.
通讯作者：
Rothstein, Mark A.
影响因子：
3.5
作者：
Black, L;Avard, D;Sauvageau, G
通讯作者：
Sauvageau, G
影响因子：
3.8
作者：
Christensen, Kurt D.;Roberts, J. Scott;Gruber, Stephen B.
通讯作者：
Gruber, Stephen B.
影响因子：
1.9
作者：
Cohen, Stephanie A.;Huziak, Rachelle C.;Grubs, Robin E.
通讯作者：
Grubs, Robin E.