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谨慎行事?人类基因组编辑中的预防、风险与责任

Playing it Safe? Precaution, Risk, and Responsibility in Human Genome Editing.

作者信息

Chan Sarah

出版信息

Perspect Biol Med. 2020;63(1):111-125. doi: 10.1353/pbm.2020.0009.

Abstract

Human germline genetic modification has long been a controversial topic. Until recently it remained largely a hypothetical debate: whether one accepted or opposed the idea in principle, it was not only too risky but impractical to execute in reality. With the advent of genome editing technologies, however, heritable modifications to the human genome became a much more concrete possibility; nonetheless, the consensus has to date remained that human heritable genome editing is not yet safe enough for clinical application. The announcement of the birth of two genome-edited babies in late 2018, therefore, was condemned almost universally as premature, irresponsible, and dangerous. But what does responsibility require, and from whom? How should risk and precaution be balanced in assessing heritable genome editing, and against what alternatives? This paper reexamines commonly held assumptions about risk and responsibility with respect to human genome editing and argues that the precautionary approach that has so far been favored is not well justified, that the risks of heritable versus somatic genome editing should be reassessed, and that a fuller account of responsibility-scientific, social, and global-is required for the ethical governance of genome editing.

摘要

人类生殖系基因改造长期以来一直是一个有争议的话题。直到最近,它在很大程度上仍主要是一场假设性的辩论:无论一个人在原则上是接受还是反对这个想法,在现实中不仅风险太大,而且不切实际。然而,随着基因组编辑技术的出现,对人类基因组进行可遗传修饰成为一种更切实可行的可能性;尽管如此,迄今为止的共识仍然是,人类可遗传基因组编辑用于临床应用还不够安全。因此,2018年末两名经过基因组编辑的婴儿诞生的消息几乎遭到了普遍谴责,被指为时过早、不负责任且危险。但责任要求什么,又要求谁来承担?在评估可遗传基因组编辑时,应如何平衡风险与预防措施,与哪些替代方案进行权衡?本文重新审视了关于人类基因组编辑的风险和责任的普遍假设,并认为迄今为止所青睐的预防原则并没有充分的依据,应重新评估可遗传基因组与体细胞基因组编辑的风险,并且基因组编辑的伦理治理需要更全面地考量责任——科学、社会和全球层面的责任。

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