Children and Families

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

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*

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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

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

Private education: in defence of hypocrisy

eton_2855585b(Photo: Daily Telegraph)

I am a bitter opponent of private education. All my political hackles rise whenever the subject is mentioned.

Yet of my four currently school-aged children, one (‘A’) is educated privately (at a specialist choir school), and another (‘B’, who is dyslexic) will shortly be in private education (at a hip, Indian-cotton swathed, high-fibre, bongo-drumming, holistic school). The two others (‘C’ and ‘D’) are currently in state primary schools. There are two older children too (‘E’ and ‘F’) They were both educated privately, at a fairly traditional school.

How can I live with myself?

One way would be to avert my eyes from the apparently plain discrepancy between my actions and my political convictions. That’s often been my strategy. But I want to attempt some kind of defence – at least in relation to A and B, and lay the ground for a potential defence in relation to C and D, should we choose to educate them privately. Continue reading

Should we prevent Zika microcephaly using birth control?

Dominic Wilkinson, University of Oxford, @Neonatalethics

The World Health Organisation is to hold an emergency meeting after considerable concern about the zika virus in South America. The epidemic has been of considerable concern particularly because it has been linked to microcephaly (unusually small heads) in newborn babies that can lead to potentially devastating brain problems.

There is fear that this virus (if it is the cause) could spread throughout the Americas, including North America. There is no vaccine or treatment for the virus, and no known treatment for children who suffer brain damage in the womb. Officials in Columbia, Ecuador, El Salavador and Jamaica have recommended that women avoid or defer becoming pregnant to prevent their babies being affected. But is it ethical to use birth control to control Zika microcephaly? Continue reading

Gene-free: Can parents refuse genetic testing for their child?

by Dominic Wilkinson @Neonatalethics

A critically ill infant in intensive care (let us call him Jonas) has serious congenital abnormalities affecting his liver and brain.1 Doctors looking after Jonas suspect that he may have a major genetic problem. They have recommended testing for Jonas, to help determine whether he does have this problem.

However, Jonas’ parents have refused consent for the genetic test. They are concerned that the test could be used to discriminate against Jonas and against them; they have repeatedly indicated that they will not agree to it being performed.

Could it ever be ethical to perform genetic testing on a child against parental wishes?

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Why are unethical neonatal trials still taking place in developing countries?

By Dominic Wilkinson, @Neonatalethics

Earlier this year, the Lancet published a trial (the ‘ACT’ trial) involving 100,000 babies at risk of being born prematurely in developing countries. Half of the mothers in the ACT trial did not receive a simple cheap medicine that has been previously shown in multiple trials and meta-analysis to reduce the risk of death for premature babies. From the ACT trial results, it appears that 89 additional babies died as a result of their mothers taking part in the trial.

Surely this is an egregious example of unethical research? It appears to be in breach of the World Medical Association Declaration of Helsinki standards. Why did ethics committees allow the research? Why did a major journal like the Lancet publish it? Why aren’t bioethicists and activist and advocacy groups like Public Citizen jumping up and down in outrage?

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