Darnovsky Marcy, Hasson Katie
Perspect Biol Med. 2020;63(1):155-176. doi: 10.1353/pbm.2020.0012.
The raging controversy about whether heritable genome editing should be permitted is shaped and structured by the prevailing and countervailing narratives in circulation. In recent years, considerable shortcomings have come to characterize this discourse; it is now time to identify and correct a number of serious misunderstandings and distortions that have taken hold. This essay begins by briefly evaluating reactions to the November 2018 announcement that gene-edited babies had been born; it asserts that widespread agreement about the researcher's recklessness and dire ethical violations concealed deep fault lines among participants in the heritable genome editing debate. It goes on to consider several key omissions and misrepresentations that distort public understanding and undermine genuine debate. It suggests that the conversation must be refocused away from technical, medical, and scientific considerations toward matters of societal meanings, values, context, and consequences. It concludes with criteria for a broadly inclusive and meaningful decision-making process about whether heritable genome editing has any place in the shared and just future to which we aspire.
关于是否应允许可遗传基因组编辑的激烈争论,是由当前流传的主流叙事和反对叙事所塑造和构建的。近年来,这一讨论呈现出相当多的缺陷;现在是时候识别并纠正一些已经根深蒂固的严重误解和歪曲了。本文首先简要评估了对2018年11月基因编辑婴儿出生这一消息的反应;文章认为,对于研究人员的鲁莽行为和严重伦理违规行为的广泛共识,掩盖了可遗传基因组编辑辩论参与者之间深刻的分歧。接着,文章探讨了一些关键的遗漏和错误表述,这些内容扭曲了公众的理解并破坏了真正的辩论。文章指出,这场讨论必须从技术、医学和科学考量转向社会意义、价值观、背景和后果等问题。文章最后提出了一些标准,用于就可遗传基因组编辑在我们所向往的共同且公正的未来中是否有立足之地进行广泛包容且有意义的决策过程。