Our aim is to promote safe, compassionate, ethical and evidence-informed healthcare for children, adolescents, and young adults with gender dysphoria
Historically, the small numbers of children presenting with gender dysphoria were primarily prepubescent males. In recent years, there has been a sharp increase in referrals of adolescents, and particularly adolescent females, to gender clinics. Many do not have a significant history of childhood gender dysphoria and a number suffer from comorbid mental health issues and neurodevelopmental conditions such as autism (ASD) and Attention-Deficit/Hyperactivity Disorder (ADHD). The reasons for these changes are understudied and remain poorly understood.
Childhood-onset gender dysphoria has been shown to have a high rate of natural resolution, with 61-98% of children reidentifying with their biological sex during puberty. The research into the course of gender dysphoria desistance among the cohort presenting with adolescent-onset gender dysphoria is still in its infancy, due to the novelty of this presentation. However, recent research from the UK clinic population suggests that 10-12% of youth may be detransitioning within 16 months to 5 years of initiating medical interventions, with an additional 20-22% discontinuing treatments for a range of reasons. The researchers noted that the detransition rate found in the recently-presenting population raises critical questions about the phenomenon of "overdiagnosis, overtreatment, or iatrogenic harm as found in other medical fields." U.S. data suggest that the rate of medical detransition has reached ~30%.
Historically, medical interventions to achieve the appearance of the desired sex were reserved primarily for adults with long histories of dysphoria. Such interventions were preceded by a prolonged engagement with the patient, including thorough psychological assessments. While objective population-level data of adult gender transitioners show persistent mental health struggles and sharply elevated mortality and morbidity, subjective patient-reported outcomes suggest low regret rates. Unfortunately, "regret" studies routinely fail to get in touch with 20-60% of the transitioned patients, leaving unanswered questions about the substantial number lost to follow-up. 'Regret" studies also suffer from other significant limitations. However, there is little reason to doubt that a number of adult transitioners, having made an informed decision regarding the balance of benefits, harms, and uncertainties, live rewarding lives.
However, around 2010's, there was a marked change in the approach to the management of gender dysphoria, particularly for gender-dysphoric youth. A number of countries in Western Europe, North America, and Australia, began to promote the "gender-affirmative" model of care for youth. Under this model of care, young people presenting with gender dysphoria or asserting a transgender identity are affirmed in their desire to undergo gender transition, and are provided with "barrier-free" hormonal and surgical interventions. While mental health professionals are often involved, their role is typically limited to preparing the young person for gender transition, regardless of any co-occurring mental health challenges or whether there was a relatively recent history of transgender identification. As such, the provision of medical intervention now happens with a much-reduced psychological assessment.
In the last 36 months, a growing number of Western countries have recognized the significant concerns with the "gender-affirmative" model of care, which became visible, in part, due to the growing voices of detransitioners and regretters coming from the novel population of gender-dysphoric youth. After completing systematic reviews of evidence, which showed that the risk-benefit ratio of youth transitions ranges from uncertain to unfavorable, these countries have begun to sunset the "gender-affirmation" practice in favor of an approach that favors psychosocial interventions as the first, and usually the only line of treatment available to most minors.
As of the current writing, the following countries have made sharp reversals of their previous "gender affirmation" practices or have signaled an intention to do so in the near future:
Other countries are seeing growing debate:
In the meantime, in North America:
The practice of medically transitioning minors, currently referred to as "gender-affirmative care," began to gain momentum following a single-site study in the Netherlands. Previously, gender transition was available only to mature adults, with the average age of transition frequently in the 30's. However, it was noted that the results of adult transitions were frequently disappointing, which was believed to be explained by unsatisfactory cosmetic outcomes, particularly for males, who had a "never disappearing masculine appearance." in the 1990's, the Dutch clinicians began to experiment with transitioning minors using endocrine interventions with the hope that a better cosmetic outcome would also lead to better mental health ones. The results of the innovative Dutch experiment, which has become known as "the Dutch Protocol," were documented in two publications: the 2011 study, which reported on cases who underwent puberty blockade, and the 2014 study, which reported on a subset of the cases who completed surgeries, including the removal of ovaries and testes upon reaching the age of 18.
The youth in the Dutch study reported high levels psychological functioning at 1.5 years after surgery, the study end point. However, both of the studies suffer from a high risk of bias due to their study design and suffer from limited applicability to the populations of adolescents presenting today According to a recently-published overview of the Dutch protocol, the interventions described in the study are currently being applied in the way there were not intended. Specifically, adolescents who were not cross-gender identified prior to puberty, who have significant mental health problems, as well as those who have non-binary identities are now commonly treated using endocrine and surgical interventions described by the Dutch—yet all of these presentations were explicitly disqualified from the Dutch protocol.
The study itself suffers from significant limitations, ranging from a weak study design, only marginal improvements in psychological function, and number of under-reported adverse health events that occurred over the course of they study (including 1 case of death and 3 cases of severe morbidity). Researchers have also questions the validity of the gender dysphoria resolution reported by the Dutch, in light of their unusual handling of the gender dysphoria scale. Despite these limitations, the Dutch clinical experiment has become the basis for the practice of medical transition of minors worldwide and serves as the basis for the recommendations outlined in the 2017 Endocrine Society guidelines and has given rise to the so-called "gender affirmative" model of care for youth, which requires access to puberty blockers, hormones, and potentially surgery.
We agree with the concerns voiced by the recent publication, "Reconsidering Informed Consent for Trans-Identified Children, Adolescents, and Young Adults," that the Dutch studies have been misunderstood and misrepresented as providing evidence of the safety and efficacy of hormonal and surgical "gender-affirming" interventions for all youth. It is important that both the strengths and the weaknesses of these studies are thoroughly understood, as these two studies represent the best available evidence behind the practice of pediatric gender transition. You can read more about the strengths and limitations of the Dutch studies here.
The history of medicine has many examples in which the well-meaning pursuit of short-term relief of symptoms has led to devastating long-term results; for example the past use of thalidomide, lobotomies, and the recent opioid epidemic. The "gender affirmative" model commits young people to lifelong medical treatment with minimal attention to the etiology of their conditions, and the psychosocial factors contributing to gender dysphoria. This model dismisses the question of whether psychological therapy might help to relieve or resolve gender dysphoria and provides interventions without an adequate examination.
We are asking clinicians and researchers to halt this uncontrolled experimentation on youth and replace it with a supportive framework of research that generates useful evidence about the etiology of gender dysphoria and the benefits and harms of various interventions. We need to know:
Which factors contribute to the development of gender dysphoria?
Which are the most effective interventions in gender dysphoria?
What are the long-term outcomes of those interventions?
We propose that, in view of the current dearth of evidence, the application of the model to children, adolescents, and young adults is unjustified outside of research settings. Further, patients, families, and clinicians cannot make fully informed healthcare decisions without knowing the likely benefits and harms of the various interventions and without appreciating the full extent of the unknowns.
SEGM promotes safe, compassionate, ethical and evidence-informed healthcare for children, adolescents, and young adults with gender dysphoria. You can donate via GoFundMe, by credit card, or by mailing us a check.
SEGM is a registered 501(c)(3) nonprofit organization. Contributions to SEGM are tax-deductible to the extent permitted by law. SEGM's tax identification number is 84-4520593.