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查理·加德和父母寻求实验性治疗的权利的重量。

Charlie Gard and the weight of parental rights to seek experimental treatment.

出版信息

J Med Ethics. 2018 Jul;44(7):448-452. doi: 10.1136/medethics-2017-104718. Epub 2018 May 17.

Abstract

The case of Charlie Gard, an infant with a genetic illness whose parents sought experimental treatment in the USA, brought important debates about the moral status of parents and children to the public eye. After setting out the facts of the case, this article considers some of these debates through the lens of parental rights. Parental rights are most commonly based on the promotion of a child's welfare; however, in Charlie's case, promotion of Charlie's welfare cannot explain every fact of the case. Indeed, some seem most logically to extend from intrinsic parental rights, that is, parental rights that exist independent of welfare promotion. I observe that a strong claim for intrinsic parental rights can be built on arguments for genetic propriety and children's limited personhood. Critique of these arguments suggests the scope of parental rights remains limited: property rights entail proper use; non-personhood includes only a small cohort of very young or seriously intellectually disabled children and the uniqueness of parental genetic connection is limited. Moreover, there are cogent arguments about parents' competence to make judgements, and public interest arguments against allowing access to experimental treatment. Nevertheless, while arguments based on propriety may raise concerns about the attitude involved in envisioning children as property, I conclude that these arguments do appear to offer a prima facie case for a parental right to seek experimental treatment in certain limited circumstances.

摘要

婴儿查理·加德(Charlie Gard)患有遗传疾病,其父母曾在美国寻求实验性治疗,该案例引发了公众对父母和子女的道德地位的重要辩论。本文在阐述案件事实的基础上,通过父母权利的视角来探讨其中的一些争议。父母权利最常见的依据是促进孩子的福利;然而,在查理的案例中,促进查理的福利并不能解释案件的所有事实。事实上,一些事实似乎最能从内在的父母权利中推断出来,即独立于福利促进的父母权利。我观察到,对内在父母权利的强烈主张可以建立在对遗传所有权和儿童有限人格的论证之上。对这些论点的批评表明,父母权利的范围仍然有限:财产权需要正当使用;非人格权仅包括一小部分非常年幼或严重智力残疾的儿童,并且父母遗传联系的独特性是有限的。此外,关于父母做出判断的能力以及反对允许获得实验性治疗的公共利益论点也有说服力。然而,尽管基于所有权的论点可能引起人们对将儿童视为财产所涉及的态度的关注,但我得出的结论是,这些论点确实似乎为父母在某些有限情况下寻求实验性治疗提供了初步的理由。

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