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）技术的快速发展迫切需要对研究的目标、过程和治理进行前瞻性思考。预期治理（AG）框架可以满足这一需求。本文通过 AG 视角回顾了有关 HGE 的学术讨论，旨在找出讨论和实践中的差距，并建议 AG 的努力如何填补这些空白。关于 HGE 的讨论没有充分考虑到 HGE 工作的制度和系统背景、投入和影响，损害了其为各种可能的未来做好准备和追求社会理想的未来的能力。在远见和公众参与方面采取更广泛和更具包容性的努力，不仅关注 HGE 活动原则上的允许性，而且关注此类工作的背景，可能有助于更好地识别与 HGE 相关的公共价值观以及研究人员、资助者所采取的行动、政策制定者和公众可以推广它们。