Centre of Medical Law and Ethics, The Dickson Poon School of Law, King's College London, UK.
Med Law Rev. 2024 May 28;32(2):178-204. doi: 10.1093/medlaw/fwae003.
Heritable human genome editing (HHGE) to correct a nuclear gene sequence that would result in a serious genetic condition in a future child is presented as 'treatment' in various ethics and policy materials, and as morally preferable to the 'selection' practice of preimplantation genetic testing (PGT), which is subject to the disability critique. However, whether HHGE is 'treatment' for a future child, or another form of 'selection', or whether HHGE instead 'treats' prospective parents, are now central questions in the debate regarding its possible legalisation. This article argues that the idea of 'treatment' for a future child is largely a proxy for 'seriousness of purpose', intended to distinguish HHGE to avoid serious genetic conditions from less obviously justifiable uses; that HHGE is best understood, and morally justified, as a form of 'treatment' for prospective parents who strongly desire an unaffected genetically related child and who have no, or poor, options to achieve this; that HHGE would be morally permissible if consistent with that child's welfare; that legalisation is supportable with reference to the right to respect for private and family life under Article 8 of the European Convention on Human Rights; and that HHGE is morally distinguishable from PGT.
可遗传的人类基因组编辑（HHGE）纠正核基因序列，从而避免未来孩子患上严重的遗传疾病，在各种伦理学和政策材料中被呈现为“治疗”手段，并且被认为比可引发残疾争议的胚胎植入前遗传学检测（PGT）“选择”实践更具道德优势。然而，HHGE 究竟是未来孩子的“治疗”手段，还是另一种“选择”方式，或者 HHGE 是否可以反过来“治疗”准父母，这些问题现在都是关于其可能合法化的辩论的核心问题。本文认为，为未来孩子提供“治疗”的观点在很大程度上是“目的严肃性”的代名词，旨在区分 HHGE 以避免严重的遗传疾病与不太合理的用途；HHGE 最好被理解为是对强烈希望生育一个未受影响的遗传相关孩子的准父母的一种“治疗”方式，而他们没有或很少有其他选择来实现这一目标；如果符合孩子的福利，HHGE 在道德上是可以允许的；参考《欧洲人权公约》第 8 条规定的尊重私人和家庭生活的权利，合法化是可以得到支持的；并且 HHGE 在道德上与 PGT 是有区别的。
