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Who Knows Best (Interests)? The Case of Charlie Gard

Cave, Emma; Nottingham, Emma

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Emma Nottingham


When baby Charlie Gard was diagnosed with a rare mitochondrial disease, his parents located a Professor of Neurology in the USA willing to provide nucleoside therapy which offered a theoretical chance of improvement and successfully raised £1.3 million through crowd funding. The decision that unproven therapy was contrary to Charlie Gard’s best interests and that life-sustaining treatment should be withdrawn was devastating for his parents and difficult for their supporters to comprehend. The decision was upheld at three levels of appeal and Charlie died in July 2017 aged 11 months. This commentary provides a critical analysis of the legal principles surrounding unproven treatment and application of the best interests test in the different contexts of hospital and court. It draws attention to conflicting guidance and explores differences in approach in relation to unproven treatment for adults lacking capacity and children.


Cave, E., & Nottingham, E. (2018). Who Knows Best (Interests)? The Case of Charlie Gard. Medical Law Review, 26(3), 500-513.

Journal Article Type Article
Acceptance Date Nov 14, 2017
Online Publication Date Dec 15, 2017
Publication Date Aug 1, 2018
Deposit Date Nov 14, 2017
Publicly Available Date Dec 15, 2019
Journal Medical Law Review
Print ISSN 0967-0742
Electronic ISSN 1464-3790
Publisher Oxford University Press
Peer Reviewed Peer Reviewed
Volume 26
Issue 3
Pages 500-513


Accepted Journal Article (684 Kb)

Copyright Statement
This is a pre-copyedited, author-produced PDF of an article accepted for publication in Medical Law Review following peer review. The version of record Cave, Emma & Nottingham, Emma (2018). Who Knows Best (Interests)? The Case of Charlie Gard. Medical Law Review 26(3): 500-513 is available online at:

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