Reflections on charlie gard and the best interests standard from both sides of the atlantic ocean

Title

Reflections on charlie gard and the best interests standard from both sides of the atlantic ocean

Creator

Ross LF

Publisher

Pediatrics

Date

2020

Subject

Clinical Decision-Making/ethics; patient advocacy; patient transfer/ethics; withholding treatment

Description

Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised 1.3 million (~$1.6 million US) on a crowdfunding platform to travel to New York to pursue experimental nucleoside bypass treatment, which was being used to treat a myopathic form of mitochondrial DNA depletion syndrome caused by mutations in a different gene (TK2). The case made international headlines about what was in Charlie's best interest. In the medical ethics community, it raised the question of whether best interest serves as a guidance principle (a principle that provides substantive directions as to how decisions are to be made), an intervention principle (a principle specifying the conditions under which third parties are to intervene), both guidance and intervention, or neither. I show that the United Kingdom uses best interest as both guidance and intervention, and the United States uses best interest for neither. This explains why the decision to withdraw the ventilator without attempting nucleoside bypass treatment was the correct decision in the United Kingdom and why the opposite conclusion would have been reached in the United States. Copyright © 2020 by the American Academy of Pediatrics

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

December 2020 List

Collection

Citation

Ross LF, “Reflections on charlie gard and the best interests standard from both sides of the atlantic ocean,” Pediatric Palliative Care Library, accessed August 1, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17296.

Social Bookmarking