I want to read this into the record. Dutch researchers pioneered youth transition for gender dysphoria. They published several papers culminating in a 2014 paper that described the outcome for 55 youths they transitioned. The Dutch protocol is now what we call affirmative care: puberty blockers, cross-sex hormones, and breast and genital surgeries. The Dutch protocol was deemed a success because the youth continued to function well after surgery. This affirmative model of care has spread wildly in the last eight years. The Dutch protocol is the foundation youth transition was built on. It is flawed, it is based on weak evidence. These are some of the problems with the Dutch study.
Many concerns have been raised about its methodology. It was a case series, a small cohort of 55 teenagers. There was no control group. The follow-up period was only 18 months. This short period should be of concern. And most importantly, there has been no long-term data reported on these 55. The Dutch have been asked for their long-term data. In a June New York Times article, Dr. de Vries, the lead author, said the Dutch has lost contact with 50% of their early cohort. Dr. de Vries was interviewed on an American podcast in January. She made it clear that their patients’ lives are much more complicated than the original study’s outcome suggests.
The Dutch, to their credit, were concerned about false transitions – transitions that would later be regretted. False transitions would be the worst possible outcome. Today we call that regret and detransition. The Dutch had inclusion and exclusion criteria hoping to limit false transitions. I want to emphasize two of these criteria. Early onset gender dysphoria was a requirement for transition. Early onset was described by the Dutch in one paper as gender dysphoria, quote, from toddlerhood, and there had to be no active mental health issues. Mental health problems excluded a teenager from transition.
The very patients the Dutch excluded, late-onset post-pubertal gender-dysphoric youth with comorbid mental health issues, are now the majority of youth being transitioned. We are transitioning the very population the Dutch excluded, excluded because they feared harm. Affirmative care with transition is now touted as the cure for mental health problems. Just eight years ago, mental health problems excluded someone from transition. Our profession has abandoned the Dutch criteria, and these criteria were never based on hard evidence, only good intentions.
Now we have objective unbiased systematic reviews, the most prominent being from Swedish and British experts. These systematic reviews tell us the evidence for youth transition is poor quality and with very low certainty for benefit. However, we are told that more and more evidence supports hormonal and surgical transition. The quality of this research is extremely questionable. I want to cite one recent example. In September just two months ago in JAMA Pediatrics, there was a study reported from Northwestern University in Chicago. 70 patients were compared, 36 had a double mastectomy and 34 did not. The patients ranged in age from 13 to 24 years. The authors concluded that mastectomy was beneficial and should not be delayed in youth. What led them to that conclusion? The finding that three months after surgery, a mere 90 days, the 36 patients, as young as 13, 14 and 15 years, were happy with their flat chests. And it was not just 36 that had surgery, it was 42. They lost nine percent of their surgical cases to follow up, nine percent in three months.
It is absurd, meaningless to draw any conclusions after three months. This paper is indicative of the quality of research we have in this field, published in our most prestigious journals. We have a serious problem. The testimony last week from those who have detransitioned is evidence of that. Finland, Sweden and England have changed course. They recognize harms are occurring, that the evidence is poor, that the Dutch protocol should not have been adopted and scaled to the extent that it has. In our last meeting I suggested we carve out an exception for research. After much thought I can no longer support that idea. I do not believe the Board is authorized to regulate medical research. That authority lies with other federal and state agencies. The Board’s duty is to regulate the general practice of medicine, and we can do that, we should do that, and allow others to address research in this field.
But I want to say something about human medical research. Ethical principles of human medical research were first articulated in the Nuremberg Code, then in the World Health Organization’s Declaration of Helsinki, and further described in the United States Belmont Report which followed the terrible revelations discovered with the Tuskegee syphilis experiments. For those that conduct future research in this area of medicine, the following questions must be answered: Can minors consent to transition? Can minors with active mental health problems consent? Can this research with hormones and surgery be done safely and ethically, when we know these treatments have negative effects on normal physiology, when these treatments probably have negative effects on an adolescent’s psychosocial development and their neurodevelopment, to include their executive decision-making? Can research with hormones and surgery be done safely and ethically when we know these treatments will lead to loss of sexual function, when we know these treatments will lead to infertility?
These ethical questions are very important, but it is also critical that researchers ask why so many young people are suffering from gender dysphoria. Depending on the survey, between 2 and 10 percent of youth now describe themselves as gender diverse. Many are suffering and need help. Researchers need to ask why this is happening. Why has the incidence of gender dysphoria skyrocketed? We would ask this question for any other condition. These questions need to be answered not just by the medical profession, but by society at large. Children and youth with gender dysphoria are suffering, they need care, the best possible care, excellent care.
We need to return to the community standard of care for treating distress, and that is psychotherapy: ethical, compassionate psychotherapy that respects the child’s experience. Let me say that again, ethical compassionate psychotherapy that respects the child’s experience. This is what Europe is doing, our colleagues in Great Britain, Sweden, Finland and elsewhere agree change is needed. Less harm needs to be done, safety and ethics need to prevail. I’m confident the Board of Medicine will do the right thing.
