Department of Philosophy and Moral Sciences, Bioethics Institute Ghent, Ghent University, Ghent, Belgium.
Hum Reprod. 2023 Nov 2;38(11):2055-2061. doi: 10.1093/humrep/dead167.
In the past decade, scientific developments in human germline genome editing (GGE) have reinvigorated questions about research ethics, responsible innovation, and what it means to do good in the field of reproductive biology and medicine. In recent years, it has become part of the ethical debate on GGE whether categorical objections about (un)naturalness, dignity, respect for the gene pool as common heritage, are and should be supplemented by more pragmatic questions about safety, utility, efficacy, and potential 'misuse', which seem to become more dominant in the moral discussion. This mini-review summarizes the morally relevant aspects of the rapidly developing domain of GGE, focusing on reproductive applications and with special attention to the ethical questions pertaining to how this technology may affect the interests of those that come to be by means of it. While vital, this encompasses more than safety considerations. Taking this perspective, it will be crucial to engage with normative questions about how GGE maps on the importance of accommodating future parents' preference to have genetically related children, and how far we should go to facilitate this. Similarly, a comprehensive ethical debate about 'appropriate application' of GGE cannot shake off the more fundamental question about how notions like 'normalcy', 'quality of life', and 'disability' can be conceptualized. This is crucial in view of respecting persons whichever traits they have and in view of acceptable boundaries to parental responsibilities.
在过去的十年中，人类生殖系基因组编辑（GGE）的科学发展重新引发了关于研究伦理、负责任的创新以及在生殖生物学和医学领域做好事意味着什么的问题的讨论。近年来，关于 GGE 是否应该用更实际的安全性、实用性、有效性和潜在的“滥用”问题来补充关于（不）自然性、尊严、尊重基因库作为共同遗产的类别性反对意见，已成为 GGE 伦理辩论的一部分，而这些问题在道德讨论中似乎变得更加突出。这篇迷你评论总结了 GGE 这一快速发展领域中与道德相关的方面，重点关注生殖应用，并特别关注与这项技术可能如何影响通过它出生的人的利益相关的伦理问题。虽然这一点至关重要，但它涵盖的不仅仅是安全方面的考虑。从这个角度出发，至关重要的是要参与关于 GGE 如何适应未来父母希望生育有遗传关系的孩子的偏好的重要性的规范性问题的讨论，以及我们应该在多大程度上促进这一点。同样，关于 GGE“适当应用”的全面伦理辩论也不能回避关于如何概念化“正常”、“生活质量”和“残疾”等概念的更基本问题。鉴于尊重无论具有何种特征的人，以及尊重父母责任的可接受界限，这一点至关重要。
