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

Journal of medical ethics, 2018-07, Vol.44 (7), p.448-452 [Peer Reviewed Journal]

Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted. ;Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018 ;Copyright: 2018 © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted. ;Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted. 2018 ;ISSN: 0306-6800 ;EISSN: 1473-4257 ;DOI: 10.1136/medethics-2017-104718 ;PMID: 29773611

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Title:
Charlie Gard and the weight of parental rights to seek experimental treatment
Author: Birchley, Giles
Subjects: Analysis ; Bioethics ; Care and treatment ; Case studies ; Charlie Gard ; Child welfare ; Children & youth ; Clinical decision making ; Company marketing practices ; Decision Making ; Deoxyribonucleic acid ; Disability ; Disabled Children ; DNA ; Families & family life ; Genetic disorders ; Health aspects ; Hospitals ; Human Rights - ethics ; Humans ; Infant ; Infant, Newborn ; Innovations ; Intensive care ; Male ; Marketing ; Medical Tourism - ethics ; Medical Tourism - psychology ; Methods ; Parent and child ; Parent-child relations ; Parental rights ; Parenting ; Parents & parenting ; Parents - psychology ; Physicians ; Sociology ; Terminally Ill - psychology ; Therapies, Investigational - ethics ; Therapies, Investigational - psychology ; Withholding Treatment - ethics
Is Part Of: Journal of medical ethics, 2018-07, Vol.44 (7), p.448-452
Description: 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.
Publisher: England: BMJ
Language: English
Identifier: ISSN: 0306-6800
EISSN: 1473-4257
DOI: 10.1136/medethics-2017-104718
PMID: 29773611
Source: Freely Accessible Journals
BMJ Journals (Open Access)
AUTh Library subscriptions: ProQuest Central
MEDLINE

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

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