Bioethics

Burke, Briggs and Wills: Why we should not fear the judgment in Charlie Gard

In a blog post today, Julian Savulescu argues that in a parallel adult version of the highly controversial Charlie Gard case, a UK court might thwart an unconscious patient’s previously expressed desire for self-funded experimental medical treatment. He finds the Gard decision deeply disturbing and suggests that we all have reason to fear the Charlie Gard judgment.

I respectfully beg to differ.

Julian’s thought experiment of the billionaire ‘Donald Wills’ is not analogous to the real Charlie Gard case, his analysis of the UK legal approach to best interests cases for adults is potentially mistaken, his fear is misplaced. 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

Agreement and disagreement about experimental treatment. The Charlie Gard Appeal

by Dominic Wilkinson and Julian Savulescu

@Neonatalethics

@juliansavulescu

Tomorrow, the UK Court of Appeal will review the controversial case of a British infant, Charlie Gard. Charlie’s parents are appealing a recent High Court decision that gave doctors permission to withdraw his life support. They have raised money for Charlie to travel to the US for an experimental medical treatment. Continue reading

Video Series: Tom Douglas on Using Neurointerventions in Crime Prevention

Should neurointerventions be used to prevent crime? For example, should we use chemical castration as part of efforts to prevent re-offending in sex offenders? What about methadone treatment for heroin-dependent offenders? Would offering such interventions to incarcerated individuals involve coercion? Would it violate their right to freedom from mental interference? Is there such a right? Should psychiatrists involved in treating offenders always do what is in their patients’ best interests or should they sometimes act in the best interests of society? Tom Douglas (Oxford) briefly introduces these issues, which he investigates in depth as part of his Wellcome Trust project ‘Neurointerventions in Crime Prevention’ (http://www.neurocorrectives.com).

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

How do medical professionals decide on treatment options for children?

Following widespread media coverage about the court case where baby Charlie Gard’s parents were told that his life support would be removed against their wishes, Dominic Wilkinson appeared on BBC’s Newsnight to discuss the factors that doctors take into account when making such difficult decisions.

Short Video
Full Programme

Good Enough Lives – Procreative Satisficence

By Dominic Wilkinson @Neonatalethics

 

Should parents undertake prenatal testing? Is there a moral reason to prevent disability in your future child through embryo selection?

In a special Moral Philosophy Seminar yesterday evening, Professor Tom Shakespeare, from the University of East Anglia, gave a nuanced and multi-faceted argument against the arguments advanced by Julian Savulescu and Jeff McMahan in favour of embryo selection. In particular he attacked Julian’s Principle of Procreative Beneficence (PB)

Procreative Beneficence (shortened version): when considering different possible children, based on relevant available information, couples should select the child who is expected to have the best life*

Continue reading

Four myths about IVF in older women

Dominic Wilkinson, @Neonatalethics

Reports that a 62-year-old Spanish woman has given birth after IVF treatment have led many to question whether there should be age limits with such treatment. Lina Alvarez, a doctor in north-west Spain, isn’t the oldest person to have had success with IVF. Earlier this year, in India, Daljinder Kaur is said to have given birth at the age of 72, prompting calls from the Indian Medical Council for a ban on fertility treatment in women over the age of 50.

In many countries where there is funding assistance for IVF there is a limit to obtaining treatment over a certain age. In Britain, for example, the bar is set at age 42. But Alvarez received private treatment. So why care about her age? And what business is it of the rest of us whether she has access to IVF?

There are several arguments that typically surface in debates about age and fertility treatment – and they are all deeply flawed. Continue reading

Guest Post: Mind the accountability gap: On the ethics of shared autonomy between humans and intelligent medical devices

Guest Post by Philipp Kellmeyer

Imagine you had epilepsy and, despite taking a daily cocktail of several anti-epileptic drugs, still suffered several seizures per week, some minor, some resulting in bruises and other injuries. The source of your epileptic seizures lies in a brain region that is important for language. Therefore, your neurologist told you, epilepsy surgery – removing brain tissue that has been identified as the source of seizures in continuous monitoring with intracranial electroencephalography (iEEG) – is not viable in your case because it would lead to permanent damage to your language ability.

There is however, says your neurologist, an innovative clinical trial under way that might reduce the frequency and severity of your seizures. In this trial, a new device is implanted in your head that contains an electrode array for recording your brain activity directly from the brain surface and for applying small electric shocks to interrupt an impending seizure.

The electrode array connects wirelessly to a small computer that analyses the information from the electrodes to assess your seizure risk at any given moment in order to decide when to administer an electric shock. The neurologist informs you that trials with similar devices have achieved a reduction in the frequency of severe seizures in 50% of patients so that there would be a good chance that you benefit from taking part in the trial.

Now, imagine you decided to participate in the trial and it turns out that the device comes with two options: In one setting, you get no feedback on your current seizure risk by the device and the decision when to administer an electric shock to prevent an impending seizure is taken solely by the device.

This keeps you completely out of the loop in terms of being able to modify your behaviour according to your seizure risk and – in a sense – relegates some autonomy of decision-making to the intelligent medical device inside your head.

In the other setting, the system comes with a “traffic light” that signals your current risk level for a seizure, with green indicating a low, yellow a medium, and red a high probability of a seizure. In case of an evolving seizure, the device may additionally warn you with an alarm tone. In this scenario, you are kept in the loop and you retain your capacity to modify your behavior accordingly, for example to step from a ladder or stop riding a bike when you are “in the red.”

Continue reading

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