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Children and Families

Puberty-Blocking Drugs: The Difficulties of Conducting Ethical Research

The ethics of research trials for young people with gender dysphoria are complicated.
Billion Photos/Shutterstock

Dominic Wilkinson, University of Oxford and Julian Savulescu, University of Oxford

A recent Newsnight programme reported that a major UK puberty-blocking trial is under investigation. Doctors at a London clinic provided drugs to block the development of puberty in young adolescents with gender dysphoria, a condition where the person experiences discomfort or distress because of a mismatch between their biological sex and gender identity.

The trial began in 2011. A year after starting the drugs, the young people were apparently more likely to report thoughts of wanting to harm themselves. The worry is that perhaps the treatment they received was causing them to have these thoughts of self-harm and suicide.

One of the criticisms of the study, put forward on Newsnight, is the design. The study involved giving the drugs to a group of adolescents and monitoring the effects. However, there was no control group, that is, adolescents who did not receive the drugs. This makes it hard to be sure whether the rates of self-harming thoughts are related to the drugs, would have happened anyway, or perhaps were lower than they would have been without treatment.Read More »Puberty-Blocking Drugs: The Difficulties of Conducting Ethical Research

In Praise Of Dementia

By Charles Foster

Statistically there is a good chance that I will ultimately develop dementia. It is one of the most feared conditions, but bring it on, I say.

It will strip me of some of my precious memories and some of my cognitive function, but it will also strip me of many of the neuroses that make life wretched. It may (but see below) make me anxious because the world takes on an unaccustomed form, but surely there are worse anxieties that are dependent on full function – such as hypochondriacal worries, or the worry that comes from watching the gradual march of a terminal illness. On balance the trade seems a good one.Read More »In Praise Of Dementia

Harmful Choices and Vaccine Refusal

By Dominic Wilkinson @Neonatalethics

 

Last week, medical specialists in the US reported a case of severe tetanus in an unvaccinated 6 year old child, (who I will call ‘C’). The boy had had a minor cut, but six days later he developed intense painful muscle spasms and was rushed to hospital. (Tetanus used to be called, for obvious reasons, “lockjaw”). C was critically unwell, required a tracheostomy and a prolonged stay in intensive care. Patients with this illness develop excruciating muscle spasms in response to noise or disturbance. C had to be heavily sedated and treated in a darkened room with ear plugs for days. The boy was finally discharged from hospital to a rehabilitation facility after 57 days (and an $811,000 hospital bill).

In a disturbing post-script to the case report, the specialists noted that despite being extensively counselled by the hospital staff that this illness could recur, his parents refused for C to be vaccinated with the tetanus (or any other) vaccine.

C has been seriously harmed by his parents’ decision to decline vaccinations. Should he now be vaccinated against his parents’ wishes? Or could a more radical response be justified?

Read More »Harmful Choices and Vaccine Refusal

Separation Anxiety – Should Treatment be Imposed for Conjoined Twins?

by Dominic Wilkinson

@Neonatalethics

On the BBC News website this week, there is a feature on a pair of conjoined twins from Senegal who are currently living in Wales. They have an extremely rare condition – fused at the lower abdomen they have separate brains, hearts and lungs, but shared liver, bladder and digestive system.

The twins travelled to the UK to access medical treatment and surgery for their condition, however, the BBC reports that there is concern that both twins would not survive the surgery. The heart of one twin (Marieme) is weak, and the worry is that if she is separated she will die. Tragically, if the twins remain conjoined there is a fear that Marieme will still die, and her twin Ndeye will also not survive.

What should happen in this case? The twins’ father, Ibrahima, is, according to reports, struggling with the terrible decision that he faces. It isn’t clear at this stage what he will decide.

But what if he refused surgery? What should happen then?Read More »Separation Anxiety – Should Treatment be Imposed for Conjoined Twins?

Abortion: a Law Unto Itself

By   Charles Foster

Wrongful life cases (typically where a birth has resulted from a failed sterilisation procedure), used to be big business. The parents would sue the negligent steriliser for the costs of bringing up the unwanted child. There was always something distasteful about parents unwishing their child, and this distaste found legal expression in Macfarlane v Tayside Health Board,1  where the House of Lords said that such claims were unlawful. The ratio of Macfarlane was summarised by the Lord Steyn in Rees v Darlington Memorial Hospital NHS Trust:2Read More »Abortion: a Law Unto Itself

Why It’s Important to Test Drugs on Pregnant Women

By Mackenzie Graham

Crosspost from The Conversation. Click here to read the full article.

The development of accessible treatment options for pregnant women is a significant public health issue. Yet, very few medications are approved for use during pregnancy. Most drug labels have little data to inform prescribing decisions. This means that most medicines taken during pregnancy are used without data to guide safe and effective dosing.

The United States Food and Drug Administration recently published draft ethical guidelines for how and when to include pregnant women in drug development clinical trials. These guidelines call for “the judicious inclusion of pregnant women in clinical trials and careful attention to potential foetal risk”. The guidelines also distinguish between risks that are related to the research and those that are not, and the appropriate level of risk to which a foetus might be exposed.Read More »Why It’s Important to Test Drugs on Pregnant Women

Should Iceland Ban Circumcision? A Legal and Ethical Analysis

By Lauren Notini and Brian D. Earp

*Note: a condensed version of this article titled “Iceland’s Proposed Circumcision Ban” is being cross-published at Pursuit.

 

For a small country, Iceland has had a big impact on global media coverage recently, following its proposed ban on male circumcision before an age of consent.

Iceland’s proposed legislation seeks to criminalise circumcision on male minors that is unnecessary “for health reasons,” stating individuals who remove “part or all of the sexual organs shall be imprisoned for up to 6 years.”

The bill claims circumcision violates children’s rights to “express their views on the issues [concerning them]” and “protection against traditions that are harmful.”

According to bill spokesperson Silja Dögg Gunnarsdóttir, a key reason for the bill is that all forms of female genital cutting (FGC), no matter how minor, have been illegal in Iceland since 2005, but no similar legislation exists for males.

“If we have laws banning circumcision for girls,” she said in an interview, then for consistency “we should do so for boys.” Consequently, the bill is not specific to male circumcision, but adapts the existing law banning FGC, changing “girls” to “children.”

There is much to unpack here. We first discuss self-determination and informed consent, before addressing claims about potential health benefits and harms. We then explore the religious significance of circumcision for some groups, and ask what implications this should have.

Read More »Should Iceland Ban Circumcision? A Legal and Ethical Analysis

Groundhog Day and Legal Appeals. (What if Alfie Were a Texan?)

By Dominic Wilkinson

@Neonatalethics

 

According to media reports, the family of seriously ill infant Alfie Evans have decided to lodge a second appeal to the Supreme Court today. This is the 6th legal appeal mounted since the High Court decision, on the 20th February, that continued medical treatment was not in Alfie’s best interests. There is no prospect that this latest legal appeal will be any more successful than the previous ones – its only effect will be to delay the inevitable decision to withdraw life-prolonging medical treatment.

However, the appeal raises an important question in relation to disputed medical treatment. The UK legal appeal system gives families the opportunity to delay decisions that they do not agree with by mounting a series of appeals. (The Court of Appeal judges yesterday referred to this as akin to a form of legal “Groundhog day” with the judges revisiting the same arguments over and over again.)  While the family of Alfie Evans may not succeed in their aim to take him overseas for medical treatment, they have achieved almost 2 months of additional intensive care for Alfie – two months of treatment that has been legally judged to be not in his interests.

Is there an alternative to the existing legal process? Is there a way to avoid protracted legal appeals in cases of disputed medical treatment?

Read More »Groundhog Day and Legal Appeals. (What if Alfie Were a Texan?)

Harm, Interests and Medical Treatment. Where the Supreme Court Got it Wrong…

By Dominic Wilkinson

@Neonatalethics

 

In the latest case of disputed medical treatment for a child, the family of Liverpool toddler Alfie Evans yesterday lost their last legal appeal. The family had appealed to the European Court of Human Rights to examine whether the UK courts’ decision (to allow doctors to stop life support) was contrary to the European Convention on Human Rights. The European Court (as it had in two other cases in the last 12 months) rejected the appeal. It is expected that the artificial ventilation that is currently keeping Alfie alive will be withdrawn in the coming days.

This decision, difficult as it is for his family to accept, is the right decision for Alfie. Medical treatment can no longer help him. As I wrote a month ago, it is time to stop fighting, time to let him go.

However, one important legal and ethical issue raised in this case, and in the case of Charlie Gard from last year, is about the basis for deciding when parents and doctors disagree. What ethical standard should apply?

Last week, the UK Supreme Court adamantly refused Alfie’s parents’ previous legal appeal, focused on this specific question.  I will argue that the court’s arguments fail and that the current UK legal approach is mistaken. (Though in fact, in the Evans case as in the case of Charlie Gard, it seems likely that the court would have reached the same decision about treatment even if it had applied a different ethical standard).

Read More »Harm, Interests and Medical Treatment. Where the Supreme Court Got it Wrong…