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

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...

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Autor principal: Birchley, Giles
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6047160/
https://www.ncbi.nlm.nih.gov/pubmed/29773611
http://dx.doi.org/10.1136/medethics-2017-104718
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author Birchley, Giles
author_facet Birchley, Giles
author_sort Birchley, Giles
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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.
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spelling pubmed-60471602018-07-18 Charlie Gard and the weight of parental rights to seek experimental treatment Birchley, Giles J Med Ethics Charlie Gard 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. BMJ Publishing Group 2018-07 2018-05-17 /pmc/articles/PMC6047160/ /pubmed/29773611 http://dx.doi.org/10.1136/medethics-2017-104718 Text en © 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. This is an open access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/
spellingShingle Charlie Gard
Birchley, Giles
Charlie Gard and the weight of parental rights to seek experimental treatment
title Charlie Gard and the weight of parental rights to seek experimental treatment
title_full Charlie Gard and the weight of parental rights to seek experimental treatment
title_fullStr Charlie Gard and the weight of parental rights to seek experimental treatment
title_full_unstemmed Charlie Gard and the weight of parental rights to seek experimental treatment
title_short Charlie Gard and the weight of parental rights to seek experimental treatment
title_sort charlie gard and the weight of parental rights to seek experimental treatment
topic Charlie Gard
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6047160/
https://www.ncbi.nlm.nih.gov/pubmed/29773611
http://dx.doi.org/10.1136/medethics-2017-104718
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