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本文引用的文献

1
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.
2
How Should We Regulate Heritable Human Genome Editing in Australia?在澳大利亚,我们应该如何监管可遗传的人类基因组编辑?
J Law Med. 2022 Jun;29(2):322-336.
3
Changes in opinions about human germline gene editing as a result of the Dutch DNA-dialogue project.荷兰 DNA 对话项目导致人们对人类 germline 基因编辑的看法发生变化。
Eur J Hum Genet. 2023 Apr;31(4):409-416. doi: 10.1038/s41431-022-01114-w. Epub 2022 May 12.
4
Toward Anticipatory Governance of Human Genome Editing: A Critical Review of Scholarly Governance Discourse.迈向人类基因组编辑的前瞻性治理:对学术治理话语的批判性审视
J Responsible Innov. 2021;8(3):382-420. doi: 10.1080/23299460.2021.1957579. Epub 2021 Jul 29.
5
Public Deliberation about Gene Editing in the Wild.公众对野外基因编辑的讨论。
Hastings Cent Rep. 2021 Nov;51 Suppl 2:S2-S10. doi: 10.1002/hast.1314.
6
A New Governance Approach to Regulating Human Genome Editing.一种规范人类基因组编辑的新治理方法。
N C J Law Technol. 2020 Dec;22(2):107-141.
7
A virtual deliberative public engagement study on heritable genome editing among South Africans: Study protocol.南非人群中可遗传基因组编辑的虚拟决策公众参与研究:研究方案。
PLoS One. 2021 Aug 19;16(8):e0256097. doi: 10.1371/journal.pone.0256097. eCollection 2021.
8
The View from the Benches: Scientists' Perspectives on the Uses and Governance of Human Gene-Editing Research.从长凳上看:科学家对人类基因编辑研究的应用和治理的看法。
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9
The Belgian DNA Debate: An Online Deliberative Platform on the Ethical, Legal, and Social Issues of Genomics.比利时 DNA 辩论:一个关于基因组学伦理、法律和社会问题的在线审议平台。
Public Health Genomics. 2021;24(3-4):149-159. doi: 10.1159/000515356. Epub 2021 May 5.
10
Heritable Human Genome Editing: The Public Engagement Imperative.可遗传的人类基因组编辑:公众参与的必要性。
CRISPR J. 2020 Dec;3(6):434-439. doi: 10.1089/crispr.2020.0049.

公众参与人类基因组编辑研究治理的前景与现实。

The Promise and Reality of Public Engagement in the Governance of Human Genome Editing Research.

机构信息

University of North Carolina School of Law.

University of North Carolina at Chapel Hill.

出版信息

Am J Bioeth. 2023 Jul;23(7):9-16. doi: 10.1080/15265161.2023.2207502. Epub 2023 May 19.

DOI:10.1080/15265161.2023.2207502
PMID:37204137
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10367578/
Abstract

This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both "public" and "engagement."

摘要

本文分析了五个组织的活动,这些组织塑造了关于全球基因组编辑治理的辩论,以评估当前的公众参与(PE)方法。我们将每个组织的建议与其自身的实践进行了比较。所有组织都建议与广大公众进行广泛的接触,但它们的实践从以科学家、专家和民间社会团体为主导的专家驱动模式,到以双向咨询当地市民为特色的公民审议驱动模式,以及结合了这两种方法的混合模式,各不相同。只有一个组织在寻求社区观点以促进公平的基础上开展公众参与实践。在大多数情况下,公众参与所做的不过是记录那些最有发言权的群体已经众所周知的观点,因此不太可能产生更公正或公平的过程或政策结果。我们对当前公众参与形式的优势、劣势和可能性的探索表明,有必要重新思考“公众”和“参与”这两个概念。