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why we need scientists on Charlie Gard

This is a guest post by Tom Sheldon, Senior Press Manager at the SMC.

There can’t be many people in the UK who haven’t heard of Charlie Gard. He’s a little boy with mitochondrial disease who is on life support. His parents want to send him to the U.S. for experimental treatment; the UK courts have ruled otherwise, on medical advice that the treatment does not show sufficient promise. At time of writing, the case has been referred back to the High Court for fresh assessment. Medics at Great Ormond Street Hospital (GOSH) think Charlie can’t be helped. His desperate parents claim otherwise, citing the support of seven international doctors and a 350,000 strong petition.

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.

That’s understandable for the GOSH doctors, who are bound by confidentiality laws and can’t discuss a patient’s details. Other scientists have been wary of discussing a case they know nothing about. Some institutions have decided to stay clear of the story. One clinician I know was instructed not to do any more media work in case of reputational damage to her institution. That might seem like sound advice on an individual level. But if everyone keeps their heads down it leaves medicine under-represented and confusing to the public and policymakers.

You could make any number of arguments for not getting involved.  I have heard lots this past week and many are not without merit. But experts being absent from a major story brings its own risks – and that is exactly what the SMC was set up to address. There have been too many cases in the past where scientists didn’t get involved, and public trust always suffers.

We don’t relish the process of dragging scientists into the media on this subject – it’s a grim story with no winner. It would be better for everyone if it all played out quietly and respectfully behind closed doors, but that isn’t the reality. Once it’s been dragged into the media glare, there is only one choice: engage and help inform the story, or stay quiet and risk misinformation taking root.

Wishing this whole saga would take place away from the media spotlight doesn’t mean scientists can’t help journalists report responsibly. Prof Neena Modi, President of the Royal College of Paediatrics and Child Health, has done this to great effect, taking to the airwaves to support the medical team at GOSH and explain the process. But crucially, she also acknowledges the unfairness of a situation where pontiffs and presidents can comment freely while the doctors closest to the case must maintain a confidential silence.  For the rest of the medical community, that course between confidentiality and public visibility must be sensitively steered – but it mustn’t be avoided.

I get it when scientists tell me that they don’t feel able to speak because they don’t have all the information, or are not experts on all aspects of the story. But that’s true of every piece of breaking news. It’s not easy, it’s always messy. The facts aren’t in, and scientists are piecing together the picture just as the rest of us are.

In a perfect world, experts would have all the facts before they had to comment. But it doesn’t work like that, and I don’t even believe it needs to. A neonatal clinician can tell me a lot about balancing a baby’s short and long term wellbeing. A paediatrician can give me the context of childhood illness. A researcher of mitochondrial diseases can explain to me how they occur and why they are so hard to treat. They can do it without passing judgement on the parents or stepping outside their expertise. They can tell me how hard the situation is, help me understand all the things we don’t know, and do it all with humanity and empathy.

Some have criticised the SMC for not acting sensitively enough, saying we should stay out of such a tragic story. But it is only at these times that medical science has the public’s attention, and it is essential that we are all well-informed about evidence, treatment and end of life care.

The remit of the SMC is to encourage and support scientists to engage with the media when their area of science hits the headlines. That is often when stories are messy, political or plain tragic – like this one, or the Grenfell fire, or Fukushima. We worked on all those stories – not to get publicity on the back of anyone’s misery but because it was essential that the public were not misled. We could sit back and do nothing but that would not make it leave the headlines; it would merely guarantee that the only voices heard in the debate are those of the politicians, media pundits and church leaders. I don’t think that would make things better.

Among those who do have the expertise to comment on this case, most seem to agree that the call to ‘save’ Charlie is at best misguided and at worst cruelly disingenuous.  Paediatricians and clinicians with mitochondrial or palliative experience are supportive of Charlie’s medical team. A broadly similar viewpoint on the nature of Charlie’s illness and the prospects of treatment has strong support across the medical community; but all bar a handful are staying quiet publicly. Responsible journalists recognise this ‘consensus’ of opinion; but they can’t make the case without the direct involvement of those experts.

So far the media reporting has been pretty decent; highly emotive, but not too ghoulish and with the weight of evidence (mostly) fairly represented. And when it came to reporting this case, it was one thing for politicians and the church to weigh in – they have their own agendas which are easier to resist in the face of medical evidence. But when a letter emerged, co-signed by a handful of scientists, one TV producer told me ‘now that there are scientists on opposite sides, I need to start giving equal weight to each’. Another senior health reporter said that the presence of those scientific signatories was a game changer; and that ‘if theirs is not the opinion of the medical majority, then others need to come forward in their numbers for interview’.

Many of the scientists I’ve spoken to have sympathy with that view, and a few are working hard with us to help ensure the public are as well informed as possible. That is as important in this story as it was with MMR/autism, GM crops and vaccines, and the more scientists do it, the greater the impact. But if too many stay quiet, there is a real risk of false balance – with people hearing a few voices ‘for’, a few ‘against’, and quite fairly conclude that the medical establishment is split down the middle on this experimental treatment. It isn’t.

So when I hear ‘I think we’re going to stay out of this one’ I fear all that will do is push media reporting towards being biased and unrepresentative. Of course, engaging with the media is never without risk; but the risk of an entire community not engaging is greater. The Mail sums it up perfectly: that after all this time the public are left ‘back in the same place, pondering the same, simple clash of arguments: a medical establishment, on one hand, saying that nothing can be done, versus a family not prepared to concede defeat’. When the family claims ‘the drugs work and seven experts from around the world can now prove it’, who could blame people for losing trust in a taciturn medical establishment?

This situation is agony for the parents. It makes uncomfortable reading for the rest of us; it’s more uncomfortable still for any expert who has to do a TV interview and tread a careful line between brutal truths and compassion. But without those experts there to help us make up our minds, we’re just guessing at the truth. We learn nothing. And that doesn’t help Charlie Gard one bit.

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