关键词: Correction Future child Heritable human genome editing (HHGE) Prospective parents Selection Treatment

Mesh : Humans Gene Editing / ethics legislation & jurisprudence Preimplantation Diagnosis / ethics Genome, Human Genetic Testing / legislation & jurisprudence ethics Genetic Therapy / ethics legislation & jurisprudence Genetic Diseases, Inborn / therapy

来  源:   DOI:10.1093/medlaw/fwae003   PDF(Pubmed)

Abstract:
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.
摘要:
在各种伦理和政策材料中,可遗传的人类基因组编辑(HHGE)纠正可能导致未来儿童严重遗传状况的核基因序列被称为“治疗”。在道德上比植入前遗传检测(PGT)的“选择”实践更可取,这受到残疾批评。然而,HHGE是否是对未来孩子的“治疗”,或另一种形式的\'选择\',或者HHGE是否会治疗未来的父母,现在是关于其可能合法化的辩论中的核心问题。本文认为,对未来孩子的“治疗”的想法在很大程度上代表了“目的的严重性”,旨在将HHGE与不太明显合理的用途区分开来,以避免严重的遗传状况;HHGE是最好的理解,在道德上是合理的,作为一种形式的\'治疗\''的准父母谁强烈希望一个未受影响的基因相关的孩子,谁没有,或贫穷,实现这一目标的选择;如果符合该儿童的福利,HHGE将在道德上是允许的;关于《欧洲人权公约》第8条尊重私人和家庭生活的权利,这种合法化是可以支持的;HHGE在道德上与PGT不同。
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