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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

Toward Anticipatory Governance of Human Genome Editing: A Critical Review of Scholarly Governance Discourse.

作者信息

Nelson John P, Selin Cynthia L, Scott Christopher T

机构信息

School for the Future of Innovation in Society, Arizona State University, 1120 South Cady Mall, Tempe, Arizona 85287-5603.

School for the Future of Innovation in Society/Consortium for Science, Policy & Outcomes, Arizona State University, 1120 South Cady Mall, Tempe, Arizona 85287-5603.

出版信息

J Responsible Innov. 2021;8(3):382-420. doi: 10.1080/23299460.2021.1957579. Epub 2021 Jul 29.

DOI:10.1080/23299460.2021.1957579
PMID:35281674
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8916747/
Abstract

The rapid development of human genome editing (HGE) techniques evokes an urgent need for forward-looking deliberation regarding the aims, processes, and governance of research. The framework of anticipatory governance (AG) may serve this need. This article reviews scholarly discourse about HGE through an AG lens, aiming to identify gaps in discussion and practice and suggest how AG efforts may fill them. Discourse on HGE has insufficiently reckoned with the institutional and systemic contexts, inputs, and implications of HGE work, to the detriment of its ability to prepare for a variety of possible futures and pursue socially desirable ones. More broadly framed and inclusive efforts in foresight and public engagement, focused not only upon the in-principle permissibility of HGE activities but upon the contexts of such work, may permit improved identification of public values relevant to HGE and of actions by which researchers, funders, policymakers, and publics may promote them.

摘要

人类基因组编辑(HGE)技术的迅速发展引发了对研究目的、过程和治理进行前瞻性思考的迫切需求。预期治理(AG)框架或许能满足这一需求。本文通过预期治理的视角回顾了关于人类基因组编辑的学术论述,旨在找出讨论和实践中的差距,并提出预期治理的努力如何填补这些差距。关于人类基因组编辑的论述对其工作的制度和系统背景、投入及影响考虑不足,这不利于为各种可能的未来做好准备并追求符合社会期望的未来。在更广泛框架下开展的、更具包容性的前瞻性和公众参与努力,不仅关注人类基因组编辑活动在原则上的可允许性,还关注此类工作的背景,这可能有助于更好地识别与人类基因组编辑相关的公共价值,以及研究人员、资助者、政策制定者和公众用以促进这些价值的行动。

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