How an Aussie study on transgender 'desistance' rates became a culture war flashpoint

A group of doctors at The Children’s Hospital at Westmead in Sydney made headlines last year following the publication of their research paper in an open-access journal called Children.

It purported to track the outcomes of 77 paediatric patients aged 8-16 who had presented to one of the hospital’s clinics.

The subsequent media interest was inevitable because the topic was ground zero of the culture wars — gender dysphoria, along with its diagnosis, treatment, the evidence base and rates of ‘desistance’.

In a front-page splash under the headline ‘Doctor scrutiny on gender clinic reveals legal and safety fears’, The Australian said the study exposed the limited “scientific basis of the gender-affirming approach followed by the nation’s children’s hospitals”.

It seemed on the surface a big deal, but as this article will show, there are some serious questions raised about the paper — both in terms of its basic methodology and its conceptual rigour.

The authors from the Westmead hospital’s gender clinic included psychiatrist Dr Kasia Kozlowska, paediatric endocrinologist Professor Geoffrey Ambler and physician Dr Joseph Elkadi.

As The Australian declared, their study was “rare” in that it was one of the few that followed the outcomes of children.

Its main conclusion was that, during 4-9 years’ follow-up, 17 patients (22%) desisted treatment.

After excluding the 11 patients in the cohort without a formal diagnosis of gender dysphoria, the researchers reported a desistance rate of 9%.

The paper concluded: “Despite the most careful screening and biopsychosocial assessment, some young persons who seek gender-affirming medical interventions and become eligible for and receive these interventions will come to regret their earlier decisions and will choose to desist or detransition.”

And they added a line that would have resonated with many, both inside and outside the medical profession, concerned about transgender treatment protocols.

“In the era of evidence-based medicine, the evidence base pertaining to the gender-affirming medical pathway is sparse, and for the young people who may regret their choice of pathway at a future point in time, the risks for potential harm are significant.”

The critics who have laid into the study since its publication have honed in on its use of the term “desistance”.

The concept is frequently employed in the transgender debate, but as with so much of the debate, it remains hotly contested.

As The Atlantic said in an article on the topic back in 2018, it is a “loaded” term that misses the complexity of gender transitions.

While this is true, it is also important to note that, for critics of the term, it is a form of conceptual fudge.

In a lengthy editorial on the Westmead paper, published late last year, Sydney paediatrician Professor Rachel Skinner and her co-authors say that the term originates in the field of criminology, where it is employed to denote “the cessation of criminal behaviours”.

To the unwary, reading about a patient desisting gender-affirming treatment suggests they stopped treatment because they no longer identified as trans — carrying the implication that the diagnosis of gender dysphoria was wrong, that subsequent treatment was unnecessary and, in cases where the treatment effects were permanent, harmful.

In the present case, the Westmead doctors have given the term a dual meaning.

In the context of their whole cohort, desistance “refers to the resolution/disappearance of the gender-related distress that was the foundation for the young person to present to the service”.

Conversely, when talking about patients with a formal diagnosis of gender dysphoria, desistance “refers to discontinuation of the journey to transition to the other gender (transgender pathway)”.

“In the gender dysphoria subgroup, the act of desisting from the transgender pathway included cessation of social transition, puberty blockers or cross-sex hormones or a combination of these elements.”

Hence, they can claim a desistance rate of both 22% and 9% at the same time.

But as Professor Skinner’s team points out, this obscures crucial distinctions.

The most obvious point is that classifying all those who cease gender-affirming treatment as ‘desistors’ can end up including people who still continue to identify as trans.

They go through the examples.

“If someone realises that a non-binary identity fits them better than a strictly trans male identity, some studies would count them as a desistor, but others would not,” they write in the editorial, published in the International Journal of Transgender Health.

“If someone purposely decides on a time-limited use of hormones, upon stopping them, they could be counted as a detransitioner.

“If someone stops treatment due to an unrelated medical concern and still identifies as transgender, some studies would count them as a desistor, while others would not.”

Professor Skinner’s team points out that many people who self-describe as trans may discontinue treatment, not because of any shift in their identity or a desire to return to their gender assigned at birth, but simply because of the intense social or family pressure they face.

Living as a transgender woman or man who has made the transition, depending on their circumstances, can be a brutal experience.

You can also throw in the vast financial costs of medical treatment along with the potential complications that usually accompany complex clinical interventions.

The simple solution for Professor Skinner and colleagues was for the Westmead authors to report separately on “regret associated with treatment and the reasons for this regret to properly contextualise data on the medical and social trajectories of trans young people”.

But this, they claim, is where study failed.

“The authors’ use of the term ‘desistance’ is even broader than the range of definitions currently used in the literature.

“Their choice to use different definitions … allows them to simultaneously claim that desistance requires desisting from a medical pathway while also claiming people who never initiated that pathway count as desistors because their gender-related distress either disappeared or resolved.

“Crucially, neither definition of desistance used requires the youth to self-describe as cisgender at follow-up.”

They note that the Westmead paper makes no mention of participants being asked by researchers about their gender dysphoria or gender identities at follow-up — presumably a crucial question to understanding the rates of regret.

Nor was it clear whether those who discontinued treatment did so because of financial costs or crucial issues of family or wider societal pressure rather than a repudiation of their chosen gender identity.

Some of the confusion resulting from the use of desistance without making clear the specific reasons for it can be highlighted in regard to three patients singled out in the Westmead study.

Out of 49 participants with a formal diagnosis of gender dysphoria who commenced puberty suppression with gonadotropin-releasing hormone agonists, these three patients subsequently stopped, or desisted, without proceeding to gender-affirming hormone treatment with oestrogen or testosterone.

The prescription of puberty blockers to those diagnosed with gender dysphoria is one of the contested areas, so desistance at this point sounds like a failure of gender-affirming care.

But Professor Skinner’s team says puberty blockers are used by doctors to allow a young person and their family time to consider whether to progress to gender-affirming hormones without experiencing distressing bodily changes of their endogenous puberty.

The idea is that, if the blockers are ceased, endogenous puberty resumes.

However, the Westmead authors included all three as people who “desisted from the transgender pathway” despite the fact that only one of the three participants who ceased puberty blockers actually self-identified as being cisgender.

In other words, only one patient in the entire study who had initiated medical treatment of any kind and subsequently stopped could actually be considered a desistor.

According to Professor Skinner and colleagues — including paediatrician Dr Cate Rayner and psychiatrist Dr Tram Nguyen, both from the gender clinic at the Royal Children’s Hospital Melbourne — the competing definitions of desistance undermine the interpretation of the data and the conclusions about the supposed failures of the gender-affirming approach.

They say the Westmead study has already been used in the US “to defend bans on care for trans youth … and to justify heavily restricting access for trans adults as well”.

And they go on to criticise the peer review and editorial processes of Children itself, saying it has failed to rectify the “questionable interpretations” in the study.

“That the publicly available, brief peer reviews did not identify any of the obvious flaws is a concern, as is the fact the article was submitted, reviewed, revised and accepted for publication all within only 10 days — an unusually short time frame.”

They stress that journal editors and peer reviewers need to better interrogate research papers before publication to ensure they do not inadvertently cause harm to an “already highly marginalised and vulnerable” population.

“This includes a process of thorough review of the methodology and interpretation conducted by knowledgeable reviewers with subject expertise.”

AusDoc contacted both the Westmead researchers and the journal’s publisher for right of reply.

While the former declined to comment, a journal relations specialist for the publisher responded with the following: “We would like to let you know that, currently, there is an internal investigation taking place on this matter.

“We are aware of the criticism that appeared in other publishers and on different social media platforms constantly regarding our company and journal.

“Please let us finish this investigation, and once we have a reply for this complaint, we will make sure to send you the details.”

None of the alleged failures of the Westmead paper function as a vindication of the gender-affirming model that underpins the current transgender clinical guidelines published in Australia.

Professor Skinner’s team states that the goal of gender-affirming medical treatment is to “ameliorate psychosocial distress associated with gender dysphoria and facilitate embodiment goals”.

They then cite the literature, with a long list of studies offering evidence underpinning the model, including its links with decreased depression and improved quality of live; that puberty progression is associated with undesired changes that exacerbate gender dysphoria and psychological distress; that the existing literature suggests adolescents treated with gender-affirming hormones experience reduced anxiety and/or depression, reduced suicidality, improved body image and so on.

But the team acknowledges that the literature is “limited by small sample sizes and design questions”, with a number of systematic reviews calling for more robust, larger and longer-term studies.

And that is important.

The culture war debate around gender-affirming medical care shows no signs of abating or losing its toxicity.

Maybe the greatest failure of the Westmead study is simply that, if it had been done better, it could have helped to fill some of the evidential void with answers to basic questions that many doctors feel could and should have been addressed by now.

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