Baylor College of Medicine, Houston, Texas.
Columbia University, New York, New York.
Am J Med Genet B Neuropsychiatr Genet. 2019 Dec;180(8):543-554. doi: 10.1002/ajmg.b.32736. Epub 2019 May 23.
Psychiatric genetics research is improving our understanding of the biological underpinnings of neurodiversity and mental illness. Using psychiatric genetics in ways that maximize benefits and minimize harms to individuals and society depends largely on how the ethical, legal, and social implications (ELSI) of psychiatric genetics are managed. The International Society of Psychiatric Genetics (ISPG) is the largest international organization dedicated to psychiatric genetics. Given its history, membership, and international reach, we believe the ISPG is well-equipped to contribute to the resolution of these ELSI challenges. As such, we recently created the ISPG Ethics Committee, an interdisciplinary group comprised of psychiatric genetics researchers, clinical geneticists, genetic counselors, mental health professionals, patients, patient advocates, bioethicists, and lawyers. This article highlights key ELSI challenges identified by the ISPG Ethics Committee to be of paramount importance for the ethical translation of psychiatric research into society in three contexts: research settings, clinical settings, and legal proceedings. For each of these arenas, we identify and discuss pressing psychiatric genetics ELSI dilemmas that merit attention and require action. The goal is to increase awareness about psychiatric genetics ELSI issues and encourage dialogue and action among stakeholders.
精神遗传学研究正在增进我们对神经多样性和精神疾病的生物学基础的理解。要想在使个人和社会受益最大化、危害最小化的前提下利用精神遗传学,在很大程度上取决于如何管理精神遗传学的伦理、法律和社会影响(ELSI)。国际精神遗传学学会(ISPG)是专门致力于精神遗传学的最大国际组织。鉴于其历史、成员和国际影响力,我们认为 ISPG 完全有能力为解决这些 ELSI 挑战做出贡献。为此,我们最近成立了 ISPG 伦理委员会,这是一个由精神遗传学研究人员、临床遗传学家、遗传咨询师、心理健康专业人员、患者、患者倡导者、生物伦理学家和律师组成的跨学科小组。本文重点介绍了 ISPG 伦理委员会确定的关键 ELSI 挑战,这些挑战对于将精神遗传学研究在三个背景下转化为社会具有至关重要的意义:研究环境、临床环境和法律程序。对于这些领域,我们确定并讨论了需要关注和采取行动的紧迫的精神遗传学 ELSI 困境。目标是提高对精神遗传学 ELSI 问题的认识,并鼓励利益相关者之间进行对话和采取行动。