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公众对人类胚胎基因组编辑在日本临床应用的态度:一项跨越多个利益相关者的横断面调查。

Public attitudes in the clinical application of genome editing on human embryos in Japan: a cross-sectional survey across multiple stakeholders.

机构信息

Department of Social Medicine, National Center for Child Health and Development, Tokyo, Japan.

Department of Clinical Research Promotion, Clinical Research Center, Hospital, National Center for Child Health and Development, Tokyo, Japan.

出版信息

J Hum Genet. 2022 Sep;67(9):541-546. doi: 10.1038/s10038-022-01042-z. Epub 2022 May 9.

DOI:10.1038/s10038-022-01042-z
PMID:35534678
Abstract

Recent advances in genome editing technology are accompanied by increasing public expectations on its potential clinical application, but there are still scientific, ethical, and social considerations that require resolution. In Japan, discussions pertaining to the clinical use of genome editing in human embryos are underway. However, understanding of the public's sentiment and attitude towards this technology is limited which is important to help guide the debate for prioritizing policies and regulatory necessities. Thus, we conducted a cross-sectional study and administered an online questionnaire across three stakeholder groups: the general public, patients and their families, and health care providers. We received responses from a total of 3,511 individuals, and the attitudes were summarized and compared among the stakeholders. Based on the distribution of responses, health care providers tended to be cautious and reluctant about the clinical use of genome editing, while patients and families appeared supportive and positive. The majority of the participants were against the use of genome editing for enhancement purposes. Participants expressed the view that clinical use may be acceptable when genome editing is the fundamental treatment, the risks are negligible, and the safety of the technology is demonstrated in human embryos. Our findings suggest differences in attitudes toward the clinical use of genome editing across stakeholder groups. Taking into account the diversity of the public's awareness and incorporating the opinion of the population is important. Further information dissemination and educational efforts are needed to support the formation of the public's opinion.

摘要

近年来,基因组编辑技术取得了进展,公众对其潜在临床应用的期望也越来越高,但仍存在需要解决的科学、伦理和社会问题。在日本,关于人类胚胎中基因组编辑的临床应用的讨论正在进行中。然而,人们对这项技术的看法和态度的理解是有限的,这对于帮助引导政策和监管的优先事项的辩论很重要。因此,我们进行了一项横断面研究,在三个利益相关者群体(普通公众、患者及其家属以及医疗保健提供者)中进行了在线问卷调查。我们共收到了 3511 名参与者的回复,并对利益相关者的态度进行了总结和比较。根据回复的分布情况,医疗保健提供者对基因组编辑的临床应用持谨慎和不情愿的态度,而患者及其家属则表示支持和积极。大多数参与者反对将基因组编辑用于增强目的。参与者认为,当基因组编辑是基本治疗方法、风险可以忽略不计且该技术在人类胚胎中证明是安全的情况下,临床应用可能是可以接受的。我们的研究结果表明,不同利益相关者群体对基因组编辑的临床应用持不同态度。考虑到公众意识的多样性,并结合公众的意见是很重要的。需要进一步进行信息传播和教育工作,以支持公众意见的形成。

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U.S. public opinion about the safety of gene editing in the agriculture and medical fields and the amount of evidence needed to improve opinions.

本文引用的文献

1
Australian Public Attitudes on Gene Editing of the Human Embryo.澳大利亚公众对人类胚胎基因编辑的态度。
J Law Med. 2018 Oct;26(1):204-207.
美国公众对农业和医学领域基因编辑安全性的看法以及改善看法所需的证据量。
Front Bioeng Biotechnol. 2024 Feb 16;12:1340398. doi: 10.3389/fbioe.2024.1340398. eCollection 2024.
4
Acceptance of genetic editing and of whole genome sequencing of human embryos by patients with infertility before and after the onset of the COVID-19 pandemic.接受基因编辑和人类胚胎全基因组测序的意愿:在 COVID-19 大流行前后,不孕患者的态度。
Reprod Biomed Online. 2023 Jul;47(1):157-163. doi: 10.1016/j.rbmo.2023.03.013. Epub 2023 Mar 24.
5
Scientists' Views on Scientific Self-Governance for Human Genome Editing Research.科学家对人类基因组编辑研究的科学自治的看法。
Hum Gene Ther. 2022 Nov;33(21-22):1157-1163. doi: 10.1089/hum.2022.087. Epub 2022 Aug 22.