The modern era of medical transitioning for transgender youths began in the Netherlands sometime in the late 1980s, when a 13 year old natal female, FG (identified as B in the medical literature), who identified as male, became the first adolescent to be treated with a puberty blocker for gender dysphoria (then known as gender identity disorder). FG continued on puberty suppression until 18 years of age, when testosterone was started, and he ultimately underwent surgical transitioning procedures at 20 and 22 years of age. This first case study appeared in the scientific literature in 1998.
A gradual increase in experience with a small number of similar patients, led to the development of the “Dutch Protocol”, introduced in 2006, which I outlined in my last post. The Dutch model was initially adopted in Boston in 2007, at which time the total accumulated published experience from the Netherlands consisted of only 54 patients.
An initial request to adopt the Dutch protocol at The Gender Identity Development Service (GIDS) in the U.K. was rejected by the NHS Research Ethics Committee in 2009, “on the grounds that it was not a proper randomized trial and therefore could not yield valid results”. The proposal was revised, arguing that a randomized trial was not practical, and submitted to a different Research Ethics Committee in 2010. The GIDS began a trial of the Dutch protocol under the guise of an experiment in 2011, at which time the published Dutch experience had increased to merely 70 patients. In 2014, the Dutch protocol was adopted as general policy at GIDS by the NHS, despite the fact that they had not published any results of their promised experiment.
Meanwhile, in the U.S., the Dutch protocol eventually morphed into the more aggressive “Gender Affirmative Model”, introduced in 2013, which has since been exported to other countries, to include back to the U.K.
This was a remarkably rapid progression, from introduction of the Dutch protocol in 2006 to the rollout of the gender affirmative model in 2013, just seven years later, especially given the limited research upon which it was based. And in the decade since, there has been a rapid rise in the number of youth referrals to gender identity clinics, an increase of anywhere between 1000% and 4000%, depending upon which country or clinic is considered, with a particularly marked rise in the number of natal females compared to natal males, and little in the way of new original research.
The earliest comprehensive critique I have found comes from a group of Australian scientists and published in the influential journal, The Lancet, in 2017. They state that “there is a dearth of research to inform evidence-based practice. Few studies have examined the ability of puberty-suppression treatments to alleviate the distress that might have been experienced by children and adolescents with a transgender identity. Similarly, very few studies have assessed physical and cognitive function during treatment.”
Similarly, a group of U.S. researchers, note that “despite the precedent of years of gender-affirmative care, the social, medical and surgical interventions are still based on very low-quality evidence. A U.S. psychologist concurred, stating, “It is obvious that our state of knowledge regarding appropriate and timely gender transition … and its consequences is not where we would like it to be.”
Due to concerns raised by a detranstioner and whistleblowers in the U.K., who we will return to next in this series, the National Health Service (NHS) recommended a review be conducted by the National Institute for Health and Care Excellence (NICE), which found that, “The key limitation to identifying the effectiveness and safety of gender-affirming hormones for children and adolescents with gender dysphoria is the lack of reliable comparative studies. All the studies included in the evidence review are uncontrolled observational studies, which are subject to bias and confounding and were of very low certainty.”
In response, the NHS to called for an independent investigation supervised by Hilary Cass, a former President of the Royal College of Paediatrics and Child Health. The review was critical of the clinical approach, the suppression of dissent, and the lack of systematic data collection at the GIDS. Among other conclusions from the Cass review: “Evidence on the appropriate management of children and young people with gender incongruence and dysphoria is inconclusive both nationally and internationally. Internationally as well as nationally, longer-term follow-up data on children and young people who have been seen by gender identity services is limited…” and “there has been research on the short-term mental health outcomes and physical side effects of puberty blockers for this cohort, but very limited research on the sexual, cognitive or broader developmental outcomes.”
So many critiques have appeared in the scientific literature in the past few years that my main problem is not finding them, but deciding which to include and which to exclude. I’ll limit myself to just four more. The first two cited below come from Oxford University sociologist Michael Biggs who published thorough critiques of the original Dutch research and the experience in the U.K. The second two come from Australian psychiatrist Alison Clayton, which are especially interesting to read. In addition to broader critiques, both articles provide examples of regretful past medical practices based on poor evidence, to include lobotomies for psychiatric patients and prone sleeping position for infants, likely contributing to tens of thousands of deaths due to SIDS.
So, is anyone paying attention to these concerns? Fortunately, the answer is yes, but not so much here at home, at least not now. As The Economist put it in their cover story this week, “On different sides of the Atlantic, medical experts have weighed the evidence for the treatment of gender-dysphoric children and teenagers, those who feel intense discomfort with their biological sex. This treatment is life-changing and can lead to infertility. Broadly speaking, the consensus in America is that medical intervention and gender affirmation are beneficial and should be more accessible. Across Europe several countries now believe that the evidence is lacking and such interventions should be used sparingly and need further study. The Europeans are right.”
In response to the NICE report and the subsequent Cass review, the NHS announced that it is restructuring its youth gender identify services. For all youth, psychosocial counseling will be a primary emphasis. Social transitioning will not be encouraged. No medical transitioning will be offered to prepubescent children. And, for adolescents, puberty blockers and cross-sex hormones will only be made available in the context of a formal research protocol.
Sweden, Finland, and Norway have all taken comparable significant steps away from gender affirmative care, emphasizing the paucity of good data to support such care, encouraging a more cautious approach to care with a particular focus on mental health care, and generally restricting the use of medical transitioning care to research centers.
Sweden’s National Board of Health and Welfare “currently assesses that the risks of puberty blockers and gender-affirming treatment are likely to outweigh the expected benefits of these treatments. Finland’s Council for Choices in Health Care acknowledges that “research data on the treatment of dysphoria due to gender identity conflicts in minors is limited”, and that there is also a “need for more information on the disadvantages of procedures and on people who regret them.” The Norwegian Healthcare Investigation Board (NIHB) “recommends that puberty blockers and hormonal and surgical gender confirmation treatment for children and young people are defined as experimental treatment.”
France has not yet restricted access to gender affirmative care, but its Académie Nationale de Médecine urges that “great medical caution must be taken in children and adolescents, given the vulnerability, particularly psychological, of this population and the many undesirable effects, and even serious complications, that some of the available therapies can cause”. It also acknowledges social contagion as a cause of the rapid rise in referrals, stating “whatever the mechanisms involved in the adolescent – overuse of social networks, greater social acceptability, or example in the entourage – this epidemic-like phenomenon results in the appearance of cases or even clusters in the immediate surroundings.”
And, notably, returning to the Netherlands, Thomas Steensma, a psychologist at the Center of Expertise on Gender Dysphoria in Amsterdam, has raised concerns about the increase in number of presenting youths, particularly the increase in natal females, and the paucity of data used to support treatment, most of which has come from his country.
“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. 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.”
“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.”
Given the current insistence on the benefits of gender affirmative care here at home, I was pleasantly surprised to find that scientific researchers in the U.S. had taken an even earlier interest in the uncertainties regarding such care. The NIH asked the Institute of Medicine to convene a consensus committee to conduct a review “assessing the state of the science on the health status” of LGBT population writ large, and their report was published way back in 2011.
Focusing only on transgender youth, some of their findings include, “a relatively small percentage of gender-variant children may develop an adult transgender identity”, and “while GnRH analogs may be used to alleviate gender dysphoria among adolescents, a paucity of empirical data exists concerning how these medical interventions affect overall physical health and well-being” (GnRH analogs is the more proper medical name for puberty blockers). They go on to argue “there is a need for more research on the health implications of hormone use (e.g., randomized controlled trials of puberty-delaying hormones, masculinizing and feminizing hormone therapies, and the consequences of long-term hormone use).”
In 2015, the NIH authorized a comprehensive study to examine the mental health and other outcomes for gender dysphoric youths treated at four gender identity clinics in the U.S. But, don’t get your hopes up; long term results will take years to accumulate, and still will not adequately address the concerns raised by the multiple government agencies and scientific panels cited above. Although this study has more participants than the Dutch studies, over 400 as of the most recent report, it is the same type of observational study, rather than the randomized control trial recommended to the NIH by the Institute of Medicine.
In the last published follow up I have found, FG was 35 years old and reportedly generally satisfied with his decision to transition, though he was not happy with the results of his metoidioplasty (the creation of penis-like structure out of the clitoris and labia). “He did not like its size and shape and he could hardly urinate in a standing position. He was able to have orgasms, but he could not have sexual intercourse. Because of his desire to have more convincingly male appearing external genitals and his wish to be able urinate in a standing position, he considered having a phalloplasty” (a much more complicated produce to create a penis-like structure utilizing donor tissue from elsewhere on the body).
The Dutch researchers obviously consider FG’s results a success, but compared to what? One has to wonder how FG might be now, if she had undergone normal female puberty; perhaps worse, but perhaps better. This is the fundamental problem with all of the youth transgender studies performed to date; there is no comparison group against which to measure success or failure. In the absence of such comparative studies, advocates for such care cannot prove they are right. The flip side is also true, however; I cannot definitively prove they are wrong, either.