Charlie Gard, the media and ethics

On July 28, 2017 Charlie Gard died. However, the question about the role of the media, the opinions of Donald Trump and the Pope, and ethics lives on.

Charlie was an almost one-year-old baby who was diagnosed with a rare and debilitating mitochondrial DNA syndrome. Following the diagnosis, London’s Great Ormond Street Hospitals’ team and an independent medical team from Barcelona, recommended that treatment should stop, and he should be allowed to die. His parents disagreed. They wanted him to be transferred to the USA to receive experimental treatment.

Neither the parents nor the hospital could agree, and the matter was referred to the courts. The High Court, the Supreme Court and the European Court of Human Rights agreed with the medical teams. The parents continued with their quest to keep their son alive, which they were entitled to do.

But was the media entitled to play the role they did? In our view, the media turned an already difficult situation into a frenzied soap opera: seeking out opinions from people such as Donald Trump and the Pope made front page news around the world, and elevating both to the extraordinary position of appearing to be more knowledgeable and certain about mitochondrial diseases than the expert consultants.

Their response to criticism? It is in the interest of the public to know what is going on. Really?

As Dr Alan Davis then wrote in The Guardian: “While tabloid newspapers employ emotion applied to speculation, professionals employ reason applied to evidence. When medical decisions come to be informed by the opinions of Donald Trump and the Pope, we know that populism is long past its sell-by date.”

“Over the last few weeks, parts of the media and some members of the public have turned a poorly baby’s life into a soap opera, into a hot legal issue being discussed around the world.”

In years to come, the Charlie Gard case will become a case study for journalism students.

For now, however, it is a salutary reminder that the media’s job is to report the facts not to create a news story.