Suppr超能文献

国际精神遗传学协会伦理委员会:我们面临的问题。

International Society of Psychiatric Genetics Ethics Committee: Issues facing us.

机构信息

Baylor College of Medicine, Houston, Texas.

Columbia University, New York, New York.

出版信息

Am J Med Genet B Neuropsychiatr Genet. 2019 Dec;180(8):543-554. doi: 10.1002/ajmg.b.32736. Epub 2019 May 23.

Abstract

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.

摘要

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。

相似文献

1
International Society of Psychiatric Genetics Ethics Committee: Issues facing us.
Am J Med Genet B Neuropsychiatr Genet. 2019 Dec;180(8):543-554. doi: 10.1002/ajmg.b.32736. Epub 2019 May 23.
2
Ethical, Legal, and Social Issues (ELSI) in Clinical Genetics Research.
Methods Mol Biol. 2021;2249:65-82. doi: 10.1007/978-1-0716-1138-8_5.
3
What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.
J Law Med Ethics. 2012 Winter;40(4):1008-24. doi: 10.1111/j.1748-720X.2012.00728.x.
4
Clinical genetic research 3: Genetics ELSI (Ethical, Legal, and Social Issues) research.
Methods Mol Biol. 2015;1281:369-82. doi: 10.1007/978-1-4939-2428-8_22.
5
An Ethics Checklist for Digital Health Research in Psychiatry: Viewpoint.
J Med Internet Res. 2022 Feb 9;24(2):e31146. doi: 10.2196/31146.
6
Understanding the Gap: A Cross-Sectional Survey of ELSI Scholars' Dissemination Practices and Translation Goals.
AJOB Empir Bioeth. 2024 Apr-Jun;15(2):147-153. doi: 10.1080/23294515.2024.2355898. Epub 2024 May 28.
7
Psychiatric genetics researchers' views on offering return of results to individual participants.
Am J Med Genet B Neuropsychiatr Genet. 2019 Dec;180(8):589-600. doi: 10.1002/ajmg.b.32682. Epub 2018 Oct 25.
8
Ethical, Legal, and Social Issues (ELSI) of Responsible Data Sharing Involving Children in Genomics: A Systematic Literature Review of Reasons.
AJOB Empir Bioeth. 2020 Oct-Dec;11(4):233-245. doi: 10.1080/23294515.2020.1818875. Epub 2020 Sep 25.
9
Improved ethical guidance for the return of results from psychiatric genomics research.
Mol Psychiatry. 2018 Jan;23(1):15-23. doi: 10.1038/mp.2017.228. Epub 2017 Nov 21.
10
Psychiatric genomics researchers' perspectives on best practices for returning results to individual participants.
Genet Med. 2020 Feb;22(2):345-352. doi: 10.1038/s41436-019-0642-7. Epub 2019 Sep 3.

引用本文的文献

2
The pharmacogenetics of the new-generation antipsychotics - A scoping review focused on patients with severe psychiatric disorders.
Front Psychiatry. 2023 Feb 16;14:1124796. doi: 10.3389/fpsyt.2023.1124796. eCollection 2023.
3
The contribution of copy number variants to psychiatric symptoms and cognitive ability.
Mol Psychiatry. 2023 Apr;28(4):1480-1493. doi: 10.1038/s41380-023-01978-4. Epub 2023 Feb 3.
4
Addressing diversity and inclusion challenges in global neuro-psychiatric and behavioral genomics research.
Front Genet. 2022 Dec 13;13:1021649. doi: 10.3389/fgene.2022.1021649. eCollection 2022.
5
Addressing the challenges of polygenic scores in human genetic research.
Am J Hum Genet. 2022 Dec 1;109(12):2095-2100. doi: 10.1016/j.ajhg.2022.10.012.
6
The Contribution of the Rüdin School to Psychiatric Genetics: The Light and the Darkness.
Schizophr Bull. 2022 Oct 19;48(Suppl 1):S1-S3. doi: 10.1093/schbul/sbac119.
7
Pharmacogenetics of Obsessive-Compulsive Disorder: An Evidence-Update.
Curr Top Behav Neurosci. 2021;49:385-398. doi: 10.1007/7854_2020_205.
8
Strategic vision for improving human health at The Forefront of Genomics.
Nature. 2020 Oct;586(7831):683-692. doi: 10.1038/s41586-020-2817-4. Epub 2020 Oct 28.
9
Return of results in a global survey of psychiatric genetics researchers: practices, attitudes, and knowledge.
Genet Med. 2021 Feb;23(2):298-305. doi: 10.1038/s41436-020-00986-x. Epub 2020 Oct 9.
10
Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers.
Eur J Hum Genet. 2021 Feb;29(2):231-240. doi: 10.1038/s41431-020-00738-0. Epub 2020 Oct 3.

本文引用的文献

1
Disability inclusion in precision medicine research: a first national survey.
Genet Med. 2019 Oct;21(10):2319-2327. doi: 10.1038/s41436-019-0486-1. Epub 2019 Mar 22.
2
Integrating Genomics into Psychiatric Practice: Ethical and Legal Challenges for Clinicians.
Harv Rev Psychiatry. 2019 Jan/Feb;27(1):53-64. doi: 10.1097/HRP.0000000000000203.
4
Schizophrenia Polygenic Risk Score as a Predictor of Antipsychotic Efficacy in First-Episode Psychosis.
Am J Psychiatry. 2019 Jan 1;176(1):21-28. doi: 10.1176/appi.ajp.2018.17121363. Epub 2018 Nov 5.
5
Psychiatric genetics researchers' views on offering return of results to individual participants.
Am J Med Genet B Neuropsychiatr Genet. 2019 Dec;180(8):589-600. doi: 10.1002/ajmg.b.32682. Epub 2018 Oct 25.
6
Return of results and data to study participants.
Science. 2018 Oct 12;362(6411):159-160. doi: 10.1126/science.aav0005.
7
Genome-wide polygenic scores for common diseases identify individuals with risk equivalent to monogenic mutations.
Nat Genet. 2018 Sep;50(9):1219-1224. doi: 10.1038/s41588-018-0183-z. Epub 2018 Aug 13.
8
Building an evidence base for stakeholder engagement.
Science. 2018 Aug 10;361(6402):554-556. doi: 10.1126/science.aat8429. Epub 2018 Aug 9.
10
Genome-wide association meta-analysis in 269,867 individuals identifies new genetic and functional links to intelligence.
Nat Genet. 2018 Jul;50(7):912-919. doi: 10.1038/s41588-018-0152-6. Epub 2018 Jun 25.

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍。

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

文档翻译

学术文献翻译模型,支持多种主流文档格式。

立即体验