Dutch puberty-blocker pioneer:  Stop “blindly adopting our research”

by Grace Williams

On February 27, Algemeen Dagblad, the second-most widely read newspaper in the Netherlands, published an astonishing article. Written by Berendien Teteleptal, the author reports that “more research on sex changes in young people under the age of 18 is urgently needed. Doctors who provide transgender care in Nijmegen and Amsterdam say they know too little about the target group and the long-term effects.” (See here for an English translation of the article.)

What makes this article surprising is that it was a Dutch team of researcher-clinicians (one of whom is extensively quoted in the piece) who pioneered the use of puberty blockers in children with gender dysphoria; this practice is now widespread in the western world.

VU University Medical Center, Amsterdam

After reading this article, I went back through some of the posts on 4thWaveNow that have mentioned Dutch research. One of the posts dates back to November 2015, not long after Denise, the founder of 4thWaveNow, started blogging, entitled “Skeptical ethicist: ‘A medical doctor is not a candy seller’.”

In the post, Denise describes an article published in June 2015 in the Journal of Adolescent Health. Published by a group of  Dutch gender dysphoria researchers, the authors report on a qualitative survey of 17 gender clinics in 10 Western countries. The survey revealed that quite a few professionals on these teams (pediatric endocrinologists, psychologists, psychiatrists, and ethicists) have reservations about early medical treatment. “The article concludes in a way that makes me feel a whisper of hope for the future.”

Several professionals mentioned that participation in the study made them think more explicitly about the various themes, and it encouraged them to discuss the issues in their teams. In the Dutch teams, we therefore introduced moral deliberation sessions to talk about these ethical topics. The first reactions of the professionals were positive; the sessions made them rethink aspects of the protocol.

That the top Dutch researcher-clinicians are now openly discussing their concerns in the mainstream media shows the prescience of Denise’s whisper of hope from almost six years ago. Does their concern stem from these “moral deliberation sessions” they started after the 2015 empirical ethical study? Could another factor be the  recent ruling in the Keira Bell case by the British High Court, limiting the use of puberty blockers in gender-dysphoric children?

Quoted in the aforementioned article by Tetelaptal, Thomas Steensma, one of the lead researcher-clinicians at the Center of Expertise on Gender Dysphoria in Amsterdam, asks some critical questions that U.S. “affirmative” clinicians largely ignore. Teteleptal writes:

Because what is behind the large increase of children who have suddenly registered for transgender care since 2013? And what is the quality of life for this group long after the sex change? There is no answer to those questions. And that must happen, think Steensma and colleagues from Nijmegen.

“We don’t know whether studies we have done in the past can still be applied to this time. Many more children are registering, and also a different type,” says Steensma. “Suddenly there are many more girls applying who feel like a boy. While the ratio was the same in 2013, now three times as many children who were born as girls register, compared to children who were born as boys.”

Steensma also raises questions about the effect of early medical intervention on future fertility:

It is still unclear whether these administered hormones affect the fertility of boys and girls. “We just don’t know,” says Steensma. “Little research has been done so far on treatment with puberty blockers and hormones in young people. That is why it is also seen as experimental. We are one of the few countries in the world that conducts ongoing research about this. In the United Kingdom, for example, only now, for the first time in all these years, a study of a small group of transgender people has been published. This makes it so difficult, almost all research comes from ourselves.”

Not only does he lament the lack of research, Steensma expresses frustration that some practitioners are applying Dutch research without adequate assessment of their patients:

We conduct structural research in the Netherlands. But the rest of the world is blindly adopting our research. While every doctor or psychologist who engages in transgender health care should feel the obligation to do a proper assessment before and after intervention.

The Dutch have always exercised more caution

The Dutch have always been more careful in their use of interventions like puberty blockers, taking care to conduct thorough assessments before proceeding. Many Dutch clinicians have practiced what has been characterized as “watchful waiting,” in contrast to the affirmation approach promoted by the most prominent gender clinicians in the United States.

It’s worth noting that it’s not just medical transition for which the Dutch have urged a slow and deliberative approach. As reported in this 2016 4thWaveNow post, the Dutch have also advised caution when it comes to social transitioning of young children. In a 2011 journal article, Steensma et al. write:

As for the clinical management in children before the age of 10, we suggest a cautious attitude towards the moment of transitioning. Given our findings that some girls, who were almost (but not entirely) living as boys in the childhood years, experienced great trouble when they wanted to return to the female gender role, we believe that parents and caregivers should fully realize the unpredictability of their child’s psychosexual outcome. They may help the child to handle their gender variance in a supportive way, but without taking social steps long before puberty, which are hard to reverse.

A 2013 study conducted by Steensma et al. found that social transition was one of the factors associated with the persistence of gender dysphoria. “Childhood social transitions were important predictors of persistence, especially among natal boys,” the authors write.

No medical consensus

Recently, at about the same time the article discussing Steensma’s concerns were reported in Algemeen Dagblad, transgender woman Rachel Levine appeared before a US Senate committee in a hearing to confirm Levine as President Biden’s assistant secretary of health. During the hearing, Senator Rand Paul asked Levine this question: “Do you believe that minors are capable of making such a life-changing decision as changing one’s sex?”

To which Levine responded: “Transgender medicine is a very complex and nuanced field with robust research and standards of care that have been developed, and if I am fortunate enough to be confirmed as the assistant secretary of health, I will look forward to working with you and your office and coming to your office and discussing the particulars of the standards of care for transgender medicine.”

Never mind that Levine failed to provide a public, direct answer to the senator’s question; note how differently Levine describes transgender medicine from how Steensma characterizes it. Levine refers to “robust research” and “standards of care.” Meanwhile, Steensma, who conducted the very research on which many US “affirmative” clinicians are basing their treatment protocols, tells a reporter: “Little research has been done so far on treatment with puberty blockers and hormones in young people. That is why it is also seen as experimental.”

If you had heard only Levine’s testimony on this matter, you might be excused for concluding that there is widespread medical consensus for the use of medical interventions in gender dysphoric minors, but you would be wrong. As Dutch researchers noted in the 2015 journal article mentioned above, “in actual practice, no consensus exists whether to use these early medical interventions.” This was true in 2015, and it remains true in 2021.

It would, of course, be going too far to suggest that Steensma no longer believes that puberty blockers and cross-sex hormones should ever be used in the treatment of adolescent gender dysphoria. Clearly he believes it’s appropriate in certain cases. In fact that’s the hallmark of the Dutch approach: individual assessment, tailored to each unique case. According to  this article published by the same author on February 28 in de Gelderlander, another Dutch publication,

Steensma does not endorse the judgment of the British court. According to him, there are children who can oversee the consequences. “But that’s an individual process. You can’t compare individuals with one another. We are not saying that hormone treatments are good for everyone. We would also never say that they are not good for anyone. We make the assessment per person.”

Again, though: In contrast to the “Wild West” of pediatric transgender medical care in the United States, where minors can get puberty blockers, hormones, and sometimes even surgery with very little assessment, the Dutch approach has traditionally been considerably more cautious and nuanced. In the de Gelderlander piece Teteleptal writes, “Steensma is perturbed by the method of some clinics and practitioners in America, for example, where puberty blockers seem to be the solution to everything.” ( English translation here.)

 

Steensma is not alone amongst Dutch clinicians. Annelou L.C. de Vries   a psychiatrist with the Department of Child and Adolescent Psychiatry at Amsterdam University Medical Centers, who, like her colleagues, has published widely on pediatric gender issues for many years. In a commentary published in the October 2020 issue of Pediatrics, de Vries writes:

According to the original Dutch protocol, one of the criteria to start puberty suppression was “a presence of gender dysphoria from early childhood on.” Prospective follow-up studies evaluating these Dutch transgender adolescents showed improved psychological functioning. However, authors of case histories and a parent-report study warrant that gender identity development is diverse, and a new developmental pathway is proposed involving youth with post puberty adolescent-onset transgender histories. These youth did not yet participate in the early evaluation studies. This raises the question whether the positive outcomes of early medical interventions also apply to adolescents who more recently present in overwhelming large numbers for transgender care, including those that come at an older age, possibly without a childhood history of GI [gender incongruence]. It also asks for caution because some case histories illustrate the complexities that may be associated with later-presenting transgender adolescents and describe that some eventually detransition.

Given their stated concerns, we can hope Steensma, de Vries and their colleagues, as well as researchers in other countries, will design studies to explore why there’s been such a dramatic increase in the number of gender-dysphoric adolescents with no history of childhood gender dysphoria, as well as why some of these young people later detransition. Lisa Littman’s 2018 paper based on parental reports is a good first step, but much more research is needed. Social contagion, along with other potential factors such as internalized homophobia, sexual trauma, autism and other neuro-atypical conditions, deserve careful and ongoing investigation by gender-dysphoria researchers.

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