Dutch Protocol in transgender care is unsustainable

Illustration: Depositphotos.com

The Dutch Health Council should conduct an independent enquiry into transgender care in the Netherlands, according to journalist Jan Kuitenbrouwer and sociologist Peter Vasterman.

The bombshell had been waiting to explode for a while and in mid-April, it did. 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 by which adolescents who want to change their gender can block the onset of 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.

That protocol, developed in the Netherlands, has been regarded as an international standard for many years. However, according to Cass, the scientific basis for its use is “remarkably weak”. There is far too little evidence to show that it works, while the health risks can be considerable. Moreover, it cannot be determined whether a trans-identity is permanent. In short, this is an experimental treatment for a 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 flocking 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. So until we know exactly where this exploding demand for care is coming from, young people should not be subjected to irreversible treatments, Cass argues.

When the report was published, all eyes turned to the Amsterdam UMC Gender Clinic, the birthplace of this treatment. The research it is based on and which cannot stand the test of criticism was conducted here. The response issued by the clinic is baffling. The clinic 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. The AUMC  says that it would be unethical to withhold treatment from patients deliberately, but this is not convincing. 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 suggested by Cass, is not deemed ethical either by the Amsterdam clinicians, although this is common 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, because the patient population has totally changed. Crucially, patients used to present long-term gender dysphoria that worsened as puberty approached. Nowadays, the largest group consists of pubescent girls without previously expressed gender doubts.

Host of mental disorders

Another point where the protocol is ‘circumvented’ relates to psychological stability: in order to qualify for treatment 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 by all-round clinics, focusing on all their symptoms, Cass concludes,

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 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, not in the least 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 reason enough 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. Just how curious are they about what’s happening to 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 suggested 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.

This article was first published in the NRC on 28 April 2024 

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