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治理的当务之急:人类基因组编辑与进步问题

Imperatives of Governance: Human Genome Editing and the Problem of Progress.

作者信息

Hurlbut J Benjamin

出版信息

Perspect Biol Med. 2020;63(1):177-194. doi: 10.1353/pbm.2020.0013.

Abstract

The ability to make direct genetic changes to the DNA of future children poses profound challenges for governance. Over the last several years, efforts to establish frameworks of ethical deliberation and governance for human genome editing have focused largely on technical criteria for proceeding with research and rules and mechanisms for regulating it. Less attention has been given to the question of who decides, and on the basis of what authority. The power to decide is exercised not only in giving answers to ethical questions or suppling policy advice, but in designating what questions should (and should not) be asked in the first place. The ways problems are framed and terms of collective debate are set is a crucial element of governance. This essay examines how certain framings that have dominated in influential arenas of deliberation about human germline genome editing underwrite (false) imperatives of governance. These imperatives have shaped not only ethical deliberation and governance agendas, but the trajectory of science itself. The essay focuses in particular upon the case of He Jiankui, arguing that his project is not an aberration, but, rather, an expression of ideas about science, ethics, and progress that are widely shared within the scientific community.

摘要

对未来儿童的DNA进行直接基因改造的能力给治理带来了深刻挑战。在过去几年里,为人类基因组编辑建立伦理审议和治理框架的努力主要集中在进行研究的技术标准以及对其进行监管的规则和机制上。对于由谁来决定以及基于何种权威这一问题的关注较少。决定权不仅体现在对伦理问题给出答案或提供政策建议上,还体现在首先确定应该(以及不应该)提出哪些问题上。问题的框架设定方式和集体辩论的条件是治理的关键要素。本文探讨了在关于人类生殖系基因组编辑的有影响力的审议领域中占主导地位的某些框架如何支持(错误的)治理要求。这些要求不仅塑造了伦理审议和治理议程,还塑造了科学本身的发展轨迹。本文特别关注贺建奎的案例,认为他的项目并非异常现象,而是科学界广泛共享的关于科学、伦理和进步的观念的一种体现。

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