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关于人类生殖基因编辑的十年公众参与:一个系统的范围审查
Wendy P Geuverink1,2, Diewertje Houtman3, Isabel R A Retel Helmrich3
1Amsterdam UMC, location Vrije Universiteit Amsterdam, Department of Human Genetics, Amsterdam, the Netherlands.
European journal of human genetics : EJHG
|November 28, 2024
概括
公众参与人类生殖基因编辑 (HGGE) 需要改进. 共同创建的努力至关重要,包括多元化的声音,收集社会价值观,并实现现实世界的影响.
科学领域:
- 生物技术和生物伦理学
- 基因组医学是基因组医学.
- 公共卫生政策 公共卫生政策
背景情况:
- 2012年CRISPR-Cas技术的出现刺激了全球关于人类生殖基因编辑 (HGGE) 的讨论.
- 人们认识到需要强有力的公众参与战略,以应对HGGE的伦理和社会影响.
- 现有的公众参与研究需要进行系统的评估,以确定差距和机会.
研究的目的:
- 系统地审查和评估有关人类生殖基因编辑 (HGGE) 的公众参与研究.
- 评估代表性不足的群体在公众参与努力中的纳入程度.
- 分析与价值收集相关的报告产出以及从HGGE参与中实现社会影响的目标.
主要方法:
- 2012年至2023年间出版的综合性系统范围审查文献.
- 广泛的数据库搜索产生了3464篇文章,随后进行了严格的选.
- 52篇全文文章的资格评估,最终包括36篇文章,代表31个不同的公众参与研究.
主要成果:
- 审查发现需要更具包容性的参与策略,针对在HGGE讨论中代表性不足的人群.
- 当前的参与往往侧重于衡量接受水平,而不是引起更深层次的社会价值观.
- 需要更清晰的框架来将公众参与活动转化为有形的社会影响.
结论:
- 共同创建的参与倡议对于有效地让各种利益相关者参与HGGE话语至关重要.
- 未来的公众参与应该优先考虑社会价值观的产生,而不是简单的接受度量.
- 开发从参与到社会影响的具体途径对于负责任的HGGE实施至关重要.
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