Photo by cubicroot XYZ on Unsplash
Published on April 28, 2024
by Jan Kuitenbrouwer and Peter Vasterman
Original: NRC – Dutch protocol in transgenderzorg is onhoudbaar
CASS Review The Health Council should conduct an independent enquiry into transgender care in the Netherlands, according to Jan Kuitenbrouwer and Peter Vasterman.
The bomb had been on its way down for a while but then, in mid-April, it detonated. British paediatrician Hilary Cass published her investigation into current practice in transgender care. With a team of dozens of researchers, Cass, former president of the Royal College of Paediatrics and Child Health, worked for four years on an exhaustive review of all available research in the field.
In particular, she focussed on the ‘Dutch Protocol’: adolescents who want to change their gender can block their puberty and then take ‘cross-sex’ hormones to become more masculine or feminine. The effect of this treatment is irreversible; the patient will have to continue taking those hormones for the rest of their lives.
The Amsterdam Gender Clinic says it always takes a “holistic” approach. However, as their name implies, gender clinics only deal with gender issues and leave the rest to other therapists. Almost everyone referred to the Amsterdam clinic receives medical treatment.
That protocol, developed in the Netherlands, has been regarded as an international standard for many years. However, according to Cass, the scientific basis for it is quite weak. Far too little evidence shows that it works, while the health risks can be considerable. Moreover, it cannot be determined whether a transidentity is permanent. In short, this is an experimental treatment for an poorly understood condition.
This is no surprise to insiders. Sweden, Finland, and several US states have already decided to curb the use of puberty blockers, with Scotland recently following suit. In England, this happened as early as 2022, based on Cass’ preliminary report. Her final report confirms the urgency: the Dutch Protocol is a medical Titanic heading for an iceberg.
Unethical
It has become increasingly clear that the patients presenting in their thousands to European gender clinics in recent years – three-quarters of them girls – are a very different type of patient from those for whom the protocol was devised 30 years ago. Until it is clear exactly where this exploding demand for care is coming from, young people should not be subjected to irreversible treatments, Cass argues.
From its publication, all eyes were on the Amsterdam UMC Gender Clinic, the birthplace of this treatment. The research that cannot stand the test of criticism was conducted here. The only response issued by the clinic is baffling. AUMC simply “disagrees” with the fundamental scientific criticism and points to the “several studies” that have shown beneficial effects. Yes, these are precisely the studies that Cass notes are of insufficient quality!
One of the problems Cass identifies is that there are no studies with a non-treated control group. AUMC only says that it would be unethical to withhold treatment from patients deliberately, but this does not convince. There are other options. The waiting time for treatment is now about three years, there is a long waiting list, and that list is, in a way, a control group, but it has not been studied. Participation in research as a condition for treatment, as Cass suggests, the Amsterdam clinicians do not consider ethical either, although this is general practice in experimental medicine. The real problem, it seems, is that the Amsterdam clinicians have forgotten their treatment is experimental in the first place!
Cass points out that the English gender clinic deviated from the criteria for the Dutch Protocol and put a much broader group on puberty blockers. Indeed, that original protocol is no longer adequate, as the patient population has totally changed. Crucially, there used to be long-term gender dysphoria that worsened as puberty approached. Nowadays, the largest group consists of girls who present at puberty without having previously expressed gender doubts.
Host of mental disorders
Another point where the protocol is ‘circumvented’ is psychological stability: the patient must not have other serious psychological problems. This new group of patients , however, is characterised by a host of mental disorders, such as ASD, anorexia, depression, trauma, etc. To prevent teenagers from being pre-sorted too quickly for irreversible treatment, care should be approached much more holistically, Cass concludes, by all-round clinics, focussing on all their symptoms.
So it is high time for an ‘audit’, not of the scientific evidence base—which is now available—but of the actual clinical practice.
The Amsterdam Gender Clinic says it always takes a “holistic” approach. However, as their name implies, gender clinics only deal with gender issues and leave the rest to other therapists. Almost everyone referred to the Amsterdam clinic receives medical treatment, including an adolescent with severe autism and even a 13-year-old with a mental disability, as was recently shown on Dutch public television in the tv-documentary Genderpoli. So, there is every reason to believe that the same thing is going on in Dutch transgender care as elsewhere.
It is time for an independent, fresh look at these issues, also because the clinicians at the AUMC Gender Clinic display a remarkable lack of self-reflection and scientific curiosity. In 2022, the clinic discouraged such an investigation because gender care was “overstretched anyway”. Read: production comes before research. The explosive growth of this problem in recent years should have been a reason to undertake every research possible, but the AUMC Gender Clinic has done no such thing. It still justifies its approach with small and, according to Cass, unsound studies, covering the pre-2018 period when this new patient type had only just emerged. How curious are they about what’s happening tot their patients?
Long-term effects
So it is high time for an ‘audit’, not of the scientific evidence base—which is now available—but of the actual clinical practice. What are the decision-making processes in the consulting rooms, and which considerations are used to decide on treatment? In addition, based on the records of the thousands of patients treated until now, research should be conducted into the long-term effects.
The proposal made in the Lower House of the Dutch Parliament (and recently by newspaper NRC) to have this research done by the Dutch National Health Council seems sensible. After all, Dutch teenagers with mental suffering are entitled to the same quality of care as elsewhere in the world.