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Grounded in Reality: Integrating Community Values and Priorities of End Users in Human Gene Editing.

作者信息

Riggan Kirsten A, Feys Roel, Kokayi Assata, Meagher Karen M, Michie Marsha, Musunuru Kiran, Ormond Kelly E, Schelhaas Andrea J, Yap Jane Q, Isasi Rosario, Allyse Megan A

机构信息

Biomedical Ethics Program, Mayo Clinic.

Miller School of Medicine, University of Miami.

出版信息

Am J Bioeth. 2024 Aug;24(8):43-45. doi: 10.1080/15265161.2024.2361880. Epub 2024 Aug 19.

DOI:10.1080/15265161.2024.2361880
PMID:39158441
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11335314/
Abstract
摘要

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本文引用的文献

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The "3 Ps" of EmPowerment, Partnership and Protection - Stakeholder Perceptions of Beneficial Outcomes of Engagement in HIV Prevention Trials.赋权、伙伴关系和保护的“3P”——利益相关者对参与艾滋病毒预防试验的有益结果的看法。
J Empir Res Hum Res Ethics. 2024 Feb;19(1-2):37-47. doi: 10.1177/15562646231221259. Epub 2023 Dec 17.
2
Translational Justice in Human Gene Editing: Bringing End User Engagement and Policy Together.人类基因编辑中的转化正义：将终端用户参与和政策结合起来。
Am J Bioeth. 2023 Jul;23(7):55-58. doi: 10.1080/15265161.2023.2207513.
3
Perceptions of airway gene therapy for cystic fibrosis.对囊性纤维化气道基因治疗的认知。
Expert Opin Biol Ther. 2023 Jan;23(1):103-113. doi: 10.1080/14712598.2022.2150544. Epub 2022 Dec 6.
4
Factors influencing patients' decision-making about preimplantation genetic testing for monogenic disorders.影响患者对单基因疾病植入前遗传学检测决策的因素。
Hum Reprod. 2022 Oct 31;37(11):2599-2610. doi: 10.1093/humrep/deac185.
5
The views of people with a lived experience of deafness and the general public regarding genetic testing for deafness in the reproductive setting: A systematic review.有听力障碍经历的人群和普通公众对生殖领域内耳聋基因检测的看法：一项系统评价。
Genet Med. 2022 Sep;24(9):1803-1813. doi: 10.1016/j.gim.2022.05.005. Epub 2022 Jun 3.
6
What is a 'serious' genetic condition? The perceptions of people living with genetic conditions.什么是“严重”的遗传疾病？患有遗传疾病人群的看法。
Eur J Hum Genet. 2022 Feb;30(2):160-169. doi: 10.1038/s41431-021-00962-2. Epub 2021 Sep 27.
7
Introduction to special issue: advancing the ethics of community-based participatory research.特刊引言：推进基于社区的参与性研究的伦理规范
J Empir Res Hum Res Ethics. 2008 Jun;3(2):1-4. doi: 10.1525/jer.2008.3.2.1.
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Gene therapy for children with cystic fibrosis--who has the right to choose?针对囊性纤维化患儿的基因治疗——谁有权做出选择？
J Med Ethics. 2006 Jun;32(6):361-4. doi: 10.1136/jme.2005.012740.