Why we need scientists on Charlie Gard

July 11, 2017

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It’s a dispute over the most distressing subject imaginable, where we have to choose who has a child’s best interests at heart when doctors and parents can’t agree. It gained international status when Donald Trump and the Pope weighed in to offer to help ‘save’ Charlie. Theresa May and Boris Johnson were forced into backing the courts. At the centre is a baby who may already have irreversible brain damage. Whether we’re comfortable with it or not, this pushes every news button.

At the SMC almost every call for a week has been about Charlie Gard. Every producer and health reporter is looking for expert reaction to Charlie’s story – his illness, the potential of the treatment, the science of mitochondrial disease, the ethics behind the agonising decision.

Getting that reaction from ethicists has been easy, and there has been some intelligent, considered debate over questions of welfare, rights and choice. I was also very pleased to issue quotes from a handful of clinicians and scientists. But overall, medical reaction has been much harder to come by.

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Image: By Nigel Cox, CC BY-SA 2.0, https://commons.wikimedia.org/w/index.php?curid=5364709

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.