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Academics have a duty to speak to the media, especially in tragic and complex cases, argues Tom Sheldon, Senior Press Manager at the Science Media Centre.

“How many more Charlies and Alfies must be paraded in front of us before we realise that keeping quiet only makes things worse?”

In July 2017 the story of Charlie Gard, a baby with incurable mitochondrial disease, played out across the media. By April 2018 we all knew the name Alfie Evans, another little boy with another untreatable condition. In both cases the medical teams and the courts agreed nothing could be done.  Both children have since died. There’s nothing enjoyable or satisfying about these stories. They are profoundly sad.

Nine months after Charlie Gard, and the rest of us watched as Alfie’s Army demonstrated outside Alder Hey Children’s Hospital and his parents were locked in bitter dispute with the medical team. For a second time, a battle over the life of a child none of us knew had become major news, and the need for expert voices to be heard in the media and by the public was as strong as ever. Yet with a few notable exceptions, the rest of the medical profession once again failed to show up, allowing misinformation around Alfie Evans to take hold. Nine months after Charlie Gard, and we have dismally failed to learn any lessons.

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