Children and Families

It’s tough to make predictions*

by Dominic Wilkinson, @Neonatalethics

The Court of Protection is due to review very soon the case of a teenager with a relapsed brain tumour. The young man had been diagnosed with the tumour as a baby, but it has apparently come back and spread so that according to his neurosurgeon he has been “going in and out of a coma”. In February, the court heard from medical specialists that he was expected to die within two weeks, and authorized doctors to withhold chemotherapy, neurosurgery and other invasive treatments, against the wishes of the boy’s parents.

However, three months after that ruling, the teenager is still alive, and so the court has been asked to review its decision. What should we make of this case? Were doctors and the court wrong?

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Shouldering the burden of risk

By Dominic Wilkinson @NeonatalEthics

 

The UK supreme court last week awarded a woman £5 million in compensation after her obstetrician failed to warn her of a risk that she would have difficulty delivering her baby. Over on the JME Blog Kirsty Keywood discusses some interesting and important legal elements of this judgment for the practice of informed consent and how this will be evaluated in negligence claims.

However, the case raises one important ethical issue. Several expert witnesses in the Montgomery case testified that informing women of even very low risks of complications of vaginal birth would likely lead to a significant increase in the number of women choosing elective caesarean section.

If that is true, would it be justified for doctors to deliberately not discuss such risks? Continue reading

An infant-sized ethics: St Cross Ethics Seminar – Dr Richard Hain

by Dominic Wilkinson @NeonatalEthics

On the 29th of January, Paediatric Palliative Care Specialist Dr Richard Hain gave the first St Cross Special Ethics Seminar for Hilary Term.

Dr Hain’s talk was titled “Mere Practicality?  Infants, interests and the value of life”. The talk abstract and a link to a podcast of his talk can be found below.

The main focus of the talk was on contemporary accounts of medical ethics and in particular on the challenge of finding an adequate account that addresses the needs of human infants. Hain drew an analogy with a blood pressure cuff or “sphygmomanometer”. Blood pressure cuffs wrap around the upper arm, and air is pumped in to them until blood flow stops through the arm (this gives a reading of the pressure in the patient’s arteries). Adult-sized blood pressure cuffs don’t work well for children or infants. A too large cuff will usually give a reading that is too low because it doesn’t take as much air to cut off the blood flow. It underestimates a child’s true blood pressure.

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Born this way? Selecting for sexual preference

Doctors Offering ‘Gay Gene’ To Same Sex Couples Wanting Gay Children: apparently Dr. William Strider at the Fertility Center of Chicago suggests that homosexual parents should have the option of increasing the chances of their kid being homosexual:

“When straight couples have children, the majority of them want their children to be straight as well. That is why most straight parents have trouble accepting it when their children announce to them that they are gay,” …  “So it only makes sense that same-sex couples would want children that carried out their same family values of homosexuality.”

The article is likely reporting wrong on what method would be used: germline manipulation sounds like a unproven and risky approach, while PGD is a proven technique that could presumably select based on X-chromosome sequence. And given the topic it is not implausible that Dr. Strider is being misquoted. But let’s take everything at face value: would it be ethical to select for sexual preference?

Aboriginal rights and refusal of treatment in Canada

Consider:

An 11 year-old girl, J.J., is diagnosed with high-risk acute lymphoblastic leukemia, a type of cancer that arises in the bone marrow. She is put on a 32-day course of chemotherapy with an estimated success rate of over 90%. Her doctors don’t know of anyone who has survived this illness without such a course of treatment. However, after just 10 days, her mother withdraws her consent to J.J.’s chemotherapy in order to pursue alternative, non-western remedies. J.J. doesn’t object, but both of her doctors believe that J.J. doesn’t understand either her illness or the importance of the treatment she is on. In all matters, she defers to her mother who is also her surrogate decision maker. The hospital in which J.J. is a patient appeals to Child Services, stating that by ceasing treatment J.J.’s mother has put J.J. into the position of a child in need of protection. Such a status would permit the hospital to continue treatment despite disagreement from J.J’s mother (in her capacity as surrogate decision maker). The case goes to trial, and a ruling is made in favour of J.J.’s mother. J.J. is taken out of the hospital in order to pursue non-western treatment alternatives. It is very likely that J.J. will die. Continue reading

What are the ethics of using brain stimulation technologies for ‘enhancement’ in children?

New open access publication: announcement:

In a recently published article, Hannah Maslen, Roi Cohen Kadosh, Julian Savulescu and I present an argument about the permissible (and not-so-permissible) uses of non-invasive brain stimulation technology in children. We consider both children who may be suffering from a specific neurological disorder, for whom the stimulation is intended as a ‘treatment’, and those who are otherwise healthy, for whom the stimulation is intended as ‘enhancement’. For the full article and citation, see here:

Maslen, H., Earp, B. D., Cohen Kadosh, R., & Savulescu, J. (2014). Brain stimulation for treatment and enhancement in children: An ethical analysisFrontiers in Human Neuroscience, Vol. 8, Article 953, 1-5. Continue reading

Should we criminalise robotic rape and robotic child sexual abuse? Maybe

Guest Post by John Danaher (@JohnDanaher)

This article is being cross-posted at Philosophical Disquisitions

I recently published an unusual article. At least, I think it is unusual. It imagines a future in which sophisticated sex robots are used to replicate acts of rape and child sexual abuse, and then asks whether such acts should be criminalised. In the article, I try to provide a framework for evaluating the issue, but I do so in what I think is a provocative fashion. I present an argument for thinking that such acts should be criminalised, even if they have no extrinsically harmful effects on others. I know the argument is likely to be unpalatable to some, and I myself balk at its seemingly anti-liberal/anti-libertarian dimensions, but I thought it was sufficiently interesting to be worth spelling out in some detail. Continue reading

Relaxed about dying?

“Now we must wait, wait. These hours…. The gurgling starts again — but how slowly a man dies! …By noon I am groping on the outer limits of reason. …every gasp lays my heart bare.” Erich Maria Remarque, All Quiet on the Western Front

In Remarque’s novel, the agony of the German soldier, witnessing the slow death of an enemy combatant, is heightened by his own guilt (the narrator had stabbed another soldier in self defense). However, his powerful evocation of distress (and guilt) at witnessing a slow dying is very close to the expressed concerns of parents and clinicians who are watching the death of a child.

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Playing the game: a story for the pool-side sun-lounger

It’s still summery, and so here is a little story for the beach or the side of the pool

‘There are challenges, certainly’, said the Boss. ‘But we’re confident that we can meet them. Or at least’, he went on, looking over his glasses for signs of dissent, ‘for a critical mass of stakeholders’.

A graph appeared on the screen at his side. He traced its lines with a red laser dot.

‘Here’, he said, ‘we have the expected rise of temperature with time. And here’ (he stabbed with the dot, as if doing the killing himself), ‘we have the consequent reduction in human population – assuming’ (and he held up a schoolmasterly finger), ‘we don’t have any HR66.’

He sipped some water, and waited for this to sink in. It did.

‘But don’t worry’, he said. ‘There’s good news. We do have HR66. Not enough for everyone, sadly, but enough to ensure that the human baton is passed on. And enough, I’m glad to say, for everyone in this room.’

There was a ripple of relief.

‘And their families, of course’, the Boss continued. ‘Families are very important to us. But all this assumes that you want to have the HR66. No one will make you. But, frankly, what’s not to like? You take a single dose, and you survive. If you don’t take it, you don’t survive. It’s as simple as that. It even tastes of candy floss. It has only one side-effect, and that’s a wholly good thing. It increases – increases, mark you – your IQ. Very, very significantly. By about 100 points, in fact. Not only will you be alive; you’ll be a genius beside whom Einstein would have seemed a hopeless retard.’

One more press of the button, and up flashed the logo of the corporation that manufactured HR66. The Boss didn’t think it relevant to mention his shareholding.

‘Naturally’, said the Boss, ‘we have to vote for this in the usual way. Yes, humanity’s facing apocalypse, and there’s one, and only one way out. But we’ve still got to do things properly. But I expect that we can move to a vote now, can’t we?’

‘I’m sure we can’, agreed the Deputy. ‘You’ve all seen the motion. All those in favour….’

‘One moment’.

The Boss and the Deputy, up on the podium, stared. Everyone else turned. A little man in tweed lisped through a badger’s beard. ‘I’d like some clarification, please.’

‘But of course, Tom’, said the Boss, magnanimous and desperately alarmed. ‘Anything you like.’

No one really knew how Tom had got into the government, or why he wanted to be there. He had no strategically significant connections, no dress sense, no publications other than some monographs on moths and mediaeval fonts, no assets other than a dumpy wife, some anarchic, unwashed children and a small cottage on Dartmoor, and no entries in the Register of Members’ Interests apart from ‘Masturbation’. This entry had caused a terrible storm. He’d been accused of injuring the dignity of the House, but, after expensive legal advice had been taken, it had been ‘reluctantly concluded’ that there was no power to force him to remove it.

‘I’d like to know’, said Tom, ‘who’s going to get the drug. And why them rather than anyone else.’ Continue reading

Epigenetics and Blaming Pregnant Women: Hasty Conclusions, Control, and Simplified Burden of Responsibility

In a recent (13.8.2014) article in Nature , Sarah S. Richardson and colleagues maintain that careless discussion of epigenetic research on how early life affects health across generations could harm women.

Authors discuss the extensive history of placing the burden of responsibility of a child’s health on the lifestyle of the pregnant mother – and the means for controlling women’s behavior. Authors describe how, for example, evidence of any fetal harm easily lead to zero-tolerance regulatory frameworks and severe informal and formal consequences (e.g. social condemnation for an occasional sip of alcohol despite the ambiguous evidence that very moderate and occasional drinking should harm the fetus), and how the “lack of emotional warmth” of the “refrigerator mothers ” was considered to be the reason to child autism as late as the 1970s. Going even more backwards in the history, various defects were attributed, for example, to the company the mother kept during pregnancy.

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