可遗传的人类基因组编辑:矫正、选择和治疗。

IF 1.8 4区 医学 Q1 LAW Medical Law Review Pub Date : 2024-05-28 DOI:10.1093/medlaw/fwae003
Rosamund Scott
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引用次数: 0

摘要

通过可遗传的人类基因组编辑(HHGE)来纠正会导致未来孩子出现严重遗传病的核基因序列,在各种伦理和政策材料中被称为 "治疗",在道义上比植入前基因检测(PGT)的 "选择 "做法更可取,后者受到残疾问题的批评。然而,HHGE 是对未来孩子的 "治疗",还是另一种形式的 "选择",或者 HHGE 是对未来父母的 "治疗",这些都是目前有关 HHGE 是否可能合法化的争论中的核心问题。本文认为,为未来孩子 "治疗 "的概念在很大程度上是 "目的的严肃性 "的代名词,其目的是将为避免严重遗传病而进行的人类基因遗传学研究与不那么明显合理的用途区分开来;人类基因遗传学研究被最好地理解为一种 "治疗 "形式,在道德上也是合理的,这种 "治疗 "是针对那些强烈希望自己的孩子不受遗传影响,但又没有或没有很好的选择来实现这一目标的未来父母;如果符合该儿童的福祉,则在道义上允许进行 HHGE;根据《欧洲人权公约》第 8 条尊重私人和家庭生活的权利,HHGE 的合法化是可以支持的;HHGE 在道义上有别于 PGT。
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Heritable human genome editing: correction, selection and treatment.

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.

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来源期刊
Medical Law Review
Medical Law Review MEDICAL ETHICS-
CiteScore
3.10
自引率
11.80%
发文量
50
审稿时长
>12 weeks
期刊介绍: The Medical Law Review is established as an authoritative source of reference for academics, lawyers, legal and medical practitioners, law students, and anyone interested in healthcare and the law. The journal presents articles of international interest which provide thorough analyses and comment on the wide range of topical issues that are fundamental to this expanding area of law. In addition, commentary sections provide in depth explorations of topical aspects of the field.
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