Lack of clarity on use of puberty-blockers for gender dysphoria treatment in Ireland

The debate in the UK about the use of puberty-blockers, an experimental treatment administered to children suffering from gender dysphoria, has in recent months seen major rulings in the London high court, a significant report from the health service, and the introduction of a new safeguard for those receiving the treatment.

By contrast, in this jurisdiction it is difficult to get anyone to comment on puberty blockers and difficult to establish what responses, if any, are occurring to events on the other side of the Irish Sea.

At the beginning of April, the English National Institute of Health and Care Excellence (Nice) produced a report about the quality of the evidence that existed to support the use of puberty blockers, a treatment which blocks the changes to the body that normally occur at puberty. The study looked at the available evidence in support of the treatment in terms of “critical outcomes” and “important outcomes”, and found that the quality of the supporting evidence in each category was “very low”.

In relation to one of the critical outcomes – whether the treatment led to improvement in the quality of life of those children and young people who were prescribed puberty blockers – the report said “no evidence was identified”. The report found that the number of existing studies was small, and that the ones that did exist were “subject to bias and confounding”.

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Confounding is where there is an unmeasured or ignored third variable that influences both the cause and the effect that is the subject of research. For instance, research suggesting when people eat more ice cream it tends to lead to more sunburn, would involve sunshine being the third, ignored variable.

The Nice report will now feed into a larger review on the provision of treatment for gender dysphoria that is being prepared in the UK by Dr Hilary Cass. That review is expected to be published later this year.

Referring the query

When The Irish Times separately asked the Department of Health, the HSE, and Children's Health Ireland (CHI) if they intended to review the delivery of puberty blockers to children and young people in this jurisdiction, in the light of the Nice report, each responded by referring the query somewhere else.

“This query is operational in nature and best directed to the HSE and to Children’s Health Ireland,” said the department.

“This query is best directed to Children’s Health Ireland,” said a spokeswoman for the HSE.

“As the HSE are commissioners of this service is it more appropriate that you contact them with you request for a comment,” said CHI.

CHI runs the Children's Hospital in Crumlin, where children and young people with gender dysphoria are treated, with some being prescribed puberty blockers. Up to recently, the UK-based Tavistock clinic played a role in the delivery of the Irish service.

Earlier this year, Crumlin Hospital was sent a “comfort letter” saying it was still indemnified for the delivery of puberty blockers, following a ruling in the UK by a three-judge divisional court of the high court, in a case where Tavistock was the defendant. At the time “less than 10” children and young people were being prescribed the treatment at Crumlin, a spokeswoman for CHI said.

The English case was taken by a woman, Keira Bell (24), who had transitioned to a man, but later detransitioned, as well as the unidentified mother of a girl with autism who was concerned that her daughter might be prescribed puberty blockers. The proportion of children with autism who suffer from gender dysphoria is higher than the proportion of children with autism in the general population.

Legal consent

Bell and the unnamed mother argued that people under 18 years of age are not in a position to give the level of legal consent required for the treatment.

Tavistock argued that children can meet the level of consent required by law. The issue for the court was consent, and not the advisability or otherwise of administering puberty blockers.

Between 2011 and 2019, the proportion of those presenting with gender dysphoria who were born female, has gone from approximately 50 per cent to 76 per cent

The three judges ruled in favour of Bell and the unidentified mother in relation to patients up to age 16. “The approach of [Tavistock] appears to have been to work on the assumption that if they give enough information and discuss it sufficiently often with the children, [the children] will be able to achieve Gillick competency [the legal test for consent] They questioned the validity of describing the treatment as “reversible”, given that it had direct effects on the recipient’s body at a crucial stage in their lives, and that puberty blockers could be viewed as a “stepping-stone” to more obviously irreversible and profound interventions.

The demand for puberty blockers has been growing in both the UK and here, and the demographics of those seeking the treatment has undergone significant change. Between 2011 and 2019, the proportion of those presenting with gender dysphoria who were born female, has gone from approximately 50 per cent to 76 per cent, the Bell judgment noted.

Court oversight

An appeal against the Bell ruling, which was interpreted as requiring court oversight for the prescribing of puberty blockers to those below 16 years, is pending.

In the wake of the ruling, NHS England decided that each young patient receiving puberty blockers should be assessed and a "best interests" application made to the courts in cases where the treatment was to be continued.

The question of whether parents could consent to their child being prescribed puberty blockers was not considered at the Bell hearing, but has since been the subject of a case (XY) presided over by Ms Justice Nathalie Lieven, who was one of the three judges in the Bell case.

In the XY case, the mother of a 15-year-old (XY), born a boy but now living as a girl, sought a declaration that she and the child’s father had the ability to give consent for XY’s continued treatment with puberty blockers, a treatment that XY had begun in July 2019.

The court was told that XY’s clinical team and her parents were all of the view that she should continue with her treatment.

The court heard that some GPs were continuing to prescribe puberty blockers to patients post the Bell judgment, while others were not, and that clarity on the issue of parental consent was needed.

The judge decided that there was no requirement or best practice obligation to seek court authorisation for the continued administration of puberty blockers, where parental consent existed.

Ruling

She said she agreed with the view that “judges do not necessarily know best, and that judges should be slow to displace the decision-making role of committed and loving parents.” In delivering her ruling she made clear that nothing she was saying should be taken as departing “to even the smallest extent” from what had been said in the Bell judgment.

The “essentially experimental nature” of puberty blockers should give any parent pause for thought, but parents regularly do consent to children receiving experimental treatments, the judge said.

She expressed two points of particular concern about parents giving consent for the treatment. Puberty blockers raise “unique and highly controversial ethical issues” and the “division of clinical and ethical views has become highly polarised”, she said. The studies supporting the treatment came from “a very small group of institutions” and this made it difficult to assess the extent to which there was a consensus in support of the treatment in the clinical and academic communities. This in turn affected the position of parents concerned for their children’s welfare, the judge said.

“The taking of strong, and perhaps fixed, positions as to the appropriateness of the use of puberty blockers may make it difficult for a parent to be given a truly independent second opinion.”

She suggested that a requirement for an independent second opinion might be adopted. Since the judgment, NHS England has established an independent review body to perform this role.

The pressure that children might put on their parents was another issue of concern raised by the judge. “Where a child has gender dysphoria and is convinced that s/he should be prescribed puberty blockers, it is likely to be very hard for the parents to refuse to consent. One does not have to be a child psychologist to appreciate the tensions that may arise within a family in this situation.” There was no evidence that such a scenario applied in the case of XY, she noted.

Address the problem

The court was told the pressure that might be felt by parents was an issue the clinicians in the Tavistock clinic were “very much aware of” and that meetings with the parents in the absence of the children were part of the efforts made to address the problem.

However the judge noted in her ruling that, despite it always having been open to doctors to approach the courts if they were concerned about a person under 16 years being prescribed puberty blockers, the services delivering the treatment had never “felt it necessary or appropriate to apply to the courts for approval”, even when the children due to receive the treatment were “well below the age of 16”.