Current Affairs

Hard lessons: learning from the Charlie Gard case

by Dominic Wilkinson and Julian Savulescu


On the 24th July 2017, the long-running, deeply tragic and emotionally fraught case of Charlie Gard reached its sad conclusion (Box 1). Following further medical assessment of the infant, Charlie’s parents and doctors finally reached agreement that continuing medical treatment was not in Charlie’s best interests. It is expected that life support will be withdrawn in the days ahead.

Over the course of multiple hearings at different levels of the court in both London and Strasbourg, the Charlie Gard case has raised a number of vexed ethical questions (Box 2). The important role of practical ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard,1 2 but we agree on the key ethical principles as well as the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection. While the lasting ramifications of the case for medical treatment decisions in children are yet to become apparent, we here outline some of the potential lessons. Continue reading

Press Release – “The Worst Outcome” Prof Dominic Wilkinson

This afternoon the long-running, deeply tragic and emotionally fraught legal dispute over treatment of Charlie Gard reached its sad and sadly inevitable conclusion. Following further medical assessment of Charlie by several international experts, Charlie’s parents and doctors finally reached agreement that continuing life support and experimental treatment could not help him.

This is the worst possible outcome for Charlie’s family. They have had to accept the devastating news that their beloved son cannot recover and that their hopes for an experimental treatment cannot be realised.

There are important lessons to learn from this case. Cases of deep disagreement between parents and doctors about treatment for a child are rare. Where they occur, it is often possible with time, patience, and support to find common ground. Where agreement cannot be reached, there is an important role for the courts in helping to reach a decision. However, court review of cases like this is not ideal. It is adversarial, costly, and lengthy. In this case, Charlie has received months of treatment that doctors and nurses caring for him felt was doing him more harm than good.

We need to find better ways to avoid cases of disagreement from coming to court. There is an important role for mediation to help parents and doctors where they have reached an impasse.

We also need a fair, expedient way of resolving disputes. This would mean that patients can access early experimental treatment if there is a reasonable chance that it would not cause significant harm. It would also mean that futile and harmful treatment is not prolonged by a protracted legal process.

Medical tourism for controversial treatment options

By Dominic Wilkinson


Baby C’s parents had done their research. They had read widely about different options for C and had clear views about what they felt would be best for their child. They had asked a number of doctors in this country, but none were willing to provide the treatment. After contacting some specialists overseas, they had found one expert who agreed. If the family were able to pay for treatment, he was willing to provide that treatment option.

However, when C’s local doctors discovered that the parents planned to leave the country for treatment the doctors embarked on court proceedings and contacted the police.

One of the questions highlighted in the Charlie Gard case has been whether his parents should be free to travel overseas for desired experimental treatment. It has been claimed that the NHS and Great Ormond St are “keeping him captive”. Why shouldn’t C’s parents be free to travel to access a medical treatment option? When, if ever, should a state intervene to prevent medical tourism? Continue reading

The ethics of treatment for Charlie Gard: resources for students/media

by Dominic Wilkinson and Julian Savulescu


The case of Charlie Gard has reached its sad conclusion. However, it continues to attract intense public attention. It raises a number of challenging and important ethical questions.

The role of Practical Ethics in cases like this is to help clarify the key concepts, identify central ethical questions, separate them from questions of scientific fact and subject arguments to critical scrutiny. We have disagreed about the right course of action for Charlie Gard, but agree on the role of ethical analysis and the importance of robust and informed debate. Ethics is not about personal opinion – but about argument, reasons, and rational reflection.

We have collected together below some of the materials on the Charlie Gard case that we and others have written as well as some relevant resources from our earlier work. We will update this page as more material becomes available. (*Updated 10/11/17) Continue reading

The sad case of Charlie Gard and the rights *and wrongs* of experimental treatment

By Dominic Wilkinson @Neonatalethics


In a blog post published yesterday, Julian Savulescu argues that Charlie Gard should have received the experimental treatment requested by his parents 6 months ago. He further argues that “we should be more aggressive about trials of therapy where there are no other good options”.

I have previously argued (in a blog and in an editorial in the Lancet) that the requested treatment is not in Charlie’s best interests. In a forthcoming paper (co-authored with John Paris, Jag Ahluwahlia, Brian Cummings and Michael Moreland), we compare the US and UK legal approaches to cases like this, and argue that the US approach is deeply flawed.

Here are four areas where I agree with Julian

  1. In retrospect, it would have been better for Charlie to have received the requested treatment 6 months ago than to have a protracted legal dispute (with continued treatment in intensive care anyway)
  2. We should generally allow patients who are dying or severely ill, without other available treatment, to try experimental treatment if that is something that they (or their family) strongly desire
  3. If experimental treatments are unaffordable in public health systems but patients are able to pay for them privately, or have crowd-sourced funding for them, they should be made available
  4. Experimental treatments should not be provided where the side effects make that treatment highly likely not to be in the patient’s interests.

However, despite these areas of common ground, I reach starkly different conclusions from Julian. In my view, the doctors were right to oppose experimental treatment for Charlie in January, the judges were right to decline the family’s request for treatment in April, and it would be deeply ethically problematic to provide the treatment now, notwithstanding the recent intervention of the US president and the Pope. Continue reading

The non-identity problem of professional philosophers

By Charles Foster

Philosophers have a non-identity problem. It is that they are not identified as relevant by the courts. This, in an age where funding and preferment are often linked to engagement with the non-academic world, is a worry.

This irrelevance was brutally demonstrated in an English Court of Appeal case,  (‘the CICA case’) the facts of which were a tragic illustration of the non-identity problem. Continue reading

Damages and communitarianism

By Charles Foster

The Lord Chancellor recently announced that the discount rate under the Damages Act 1996 would be decreased from 2.5% to minus 0.75%. This sounds dull. In fact it is financially tectonic, and raises some important ethical questions.

In the law of tort, damages are intended to put a claimant in the position that she would have been in had the tort not occurred. A claimant who, as result of negligence on the part of a defendant, suffers personal injury, will be entitled to, inter alia, damages representing future loss of earnings, the future cost of care and, often, private medical and other treatment.

Where damages are awarded as a lump sum, there is a risk of over-compensating a claimant. Suppose that the claimant is 10 years old at the time of the award, and will live for 70 years, and the future care costs are £1000 a year for life. Should the sum awarded be £1000 x 70 years = £70,000? (70, here, is what lawyers call the ‘multiplier’). It depends on the assumption one makes about what the claimant will do with the lump sum. If she invests it in equities that give her (say) an annual 5% return, £70,000 would over-compensate her.

In the case of Wells v Wells1, the House of Lords decided that, to avoid the risk of under-compensation, claimants should be treated as risk-averse investors. It should be assumed, said the House, that the discount rate should be fixed by reference to the return on index-linked gilts – Government securities. The rate was 2.5% from 2001 until February of this year. The reasons for the change to minus 0.75% are hereContinue reading

The bright side of Brexit

Let’s suppose, entirely hypothetically and for the sake of argument, that Brexit is a disaster for the UK. Let’s suppose that sterling crashes; that foreign travel is punishingly expensive and that, if you can afford to go abroad, you’re a laughing stock. Let’s suppose that the Treasury’s estimates of billions of pounds of losses each year are reasonably accurate; that unemployment rises; that credit ratings plummet. Let’s suppose Brexit creates a corrosive tide of racism; that things that should never be said, and can never be unsaid, are shouted at high volume. Let’s suppose that there’s a torrential brain drain; that UK universities fall down the international league tables; that the innovative treatments prescribed (to private patients only, unfortunately – no money left for the NHS) by the UK’s (predominantly white) doctors are all devised in New York, Paris and Rome rather than London and Leeds. Let’s suppose that the environment, unprotected by EU legislation, is trashed, and that Scotland leaves the UK.  Let’s suppose, too, that nervousness about all this creates an increasingly authoritarian style of government .

If all that happens, it’ll be great. At least if you’re a consistent utilitarian. The horror of the UK’s experience will strengthen the EU and prevent other countries from thinking that they should leave the Union – which would have similarly disastrous results for them and, if the EU itself dissolves, tectonic consequences for the stability of the world. Continue reading

The Clickbait Candidate

By James Williams (@WilliamsJames_)
Note: This is a cross-post with Quillette magazine.

While ‘interrobang’ sounds like a technique Donald Trump might add to the Guantanamo Bay playbook, it in fact refers to a punctuation mark: a disused mashup of interrogation and exclamation that indicates shock, surprise, excitement, or disbelief. It looks like this: ‽ (a rectangle means your font doesn’t support the symbol). In view of how challenging it seems for anyone to articulate the fundamental weirdness of Trump’s proximity to the office of President of the United States, I propose that we resuscitate the interrobang, because our normal orthographic tools clearly are not up to the task.

Yet even more interrobang-able than the prospect of a Trump presidency is the fact that those opposing his candidacy seem to have almost no understanding of the media dynamics that have enabled it to rise and thrive. Trump is perhaps the most straightforward embodiment of the dynamics of the so-called ‘attention economy’—the pervasive, all-out war over our attention in which all of our media have now been conscripted—that the world has yet seen. He is one of the geniuses of our time in the art of attentional manipulation.

If we ever hope to have a societal conversation about the design ethics of the attention economy—especially the ways in which it incentivizes technology design to push certain buttons in our brains that are incompatible with the assumptions of democracy—now would be the time. Continue reading

Anybody Out There?

By Guy Kahane

These days it seems as if every couple of weeks or so we get reports about newly discovered planets that are ever more similar to Earth. The most recent discovery, planet Proxima b, is the closest planet found so far; Scientific American called it ‘the Earth next door’. Last October, an amateur group of astronomers noticed that the star KIC8462852 was flickering in an odd way, its brightness changing by up to 22 per cent, a much larger change than could be explained by any familiar cause. Some science fiction fans speculated that this might be a ‘Dyson Sphere’—signs of a super-advanced civilization desperately trying to harness energy from their sun. No convincing explanation of this effect has been found so far, and another star, called EPIC 204278916, was recently spotted exhibiting the same mysterious flicker. Then it was reported that Russian radio astronomers recorded a two-second burst of mysteriously strong radio waves coming from a sun-like star in the Hercules constellation.

We know we shouldn’t get too excited. Even if there are numerous Earth-like planets out there, they may all be lifeless. And scientists will probably eventually find perfectly natural explanations for these strange flickers and signals (the Russian report already seems to be a false alarm, caused by terrestrial interference). But still: it’s hard not to anticipate the day—perhaps in the coming few years, perhaps later in our lifetime—when strong, perhaps undeniable evidence of intelligent life elsewhere in the universe will emerge. It sure feels as if that will be an incredibly important discovery. Arthur C. Clarke once said that “there are two possibilities: either we are alone in the universe, or we are not. Both are equally terrifying.” But it’s not that easy to explain why.

Continue reading


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