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关于人类生殖系基因编辑的十年公众参与:一项系统的范围综述。

A decade of public engagement regarding human germline gene editing: a systematic scoping review.

作者信息

Geuverink Wendy P, Houtman Diewertje, Retel Helmrich Isabel R A, Kist Joosje D, Henneman Lidewij, Cornel Martina C, Riedijk Sam R

机构信息

Amsterdam UMC, location Vrije Universiteit Amsterdam, Department of Human Genetics, Amsterdam, the Netherlands.

Amsterdam Reproduction and Development Research Institute, Amsterdam, the Netherlands.

出版信息

Eur J Hum Genet. 2025 May;33(5):570-579. doi: 10.1038/s41431-024-01740-6. Epub 2024 Nov 28.

Abstract

Following the discovery of the CRISPR-Cas technology in 2012, there has been a growing global call for public engagement regarding the potential use of human germline gene editing (HGGE). In this systematic scoping review, we aim to evaluate public engagement studies considering the following questions based on three points of attention: 1) Inclusion of underrepresented groups: who have been engaged? 2) Gathering values: what output has been reported? 3) Reaching societal impact: what objectives of public engagement have been reported? A systematic literature search from 2012 to 2023 identified 3464 articles reporting on public engagement studies regarding HGGE retrieved from 12 databases. After screening, 52 full-text articles were assessed for eligibility, resulting in 36 articles that cover 31 public engagement studies. We conclude that co-created efforts are needed to engage underrepresented groups as well as to yield values rather than acceptance levels, and to concretise how engagement might result in societal impact.

摘要

2012年CRISPR-Cas技术被发现后,全球对于人类生殖系基因编辑(HGGE)潜在用途的公众参与的呼声日益高涨。在这项系统性综述中,我们旨在基于三个关注点评估公众参与研究,这些关注点涉及以下问题:1)代表性不足群体的纳入:哪些人参与了?2)价值观收集:报告了哪些成果?3)实现社会影响:报告了公众参与的哪些目标?2012年至2023年的系统性文献检索从12个数据库中识别出3464篇关于HGGE公众参与研究的文章。筛选后,对52篇全文进行了资格评估,最终有36篇文章涵盖了31项公众参与研究。我们得出结论,需要共同努力,让代表性不足的群体参与进来,以产生价值而非接受程度,并明确参与如何可能带来社会影响。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/8613/12048525/07e040e36200/41431_2024_1740_Fig1_HTML.jpg

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