How do you provide the best possible medical care to children and young people who do not feel at home in the gender assigned to them at birth? This question has been discussed for years far beyond specialist circles. Now a new guideline is intended to create more treatment safety. In a process that lasted over seven years, representatives of 27 specialist societies and two organizations affected by the disease agreed on recommendations. The guidelines are currently available to the specialist societies for comment and will be finalized in the coming weeks.
The experts first point out the fundamentally challenging ethical task in pediatric and adolescent medicine of balancing the duty of protection and care of adults on the one hand and the desire for self-determination of minors on the other. “We have to protect children or young people from incorrect decisions, from damage to their bodies and souls,” said Claudia Wiesemann, director of the Institute for Ethics and History of Medicine at the University of Göttingen, when presenting the draft in a press briefing Science Media Center. “But we must not forget the right to self-determination over one’s own body. That doesn’t just start at the age of 18.”
Basically, the guidelines, which were developed for Germany, Austria and Switzerland, are intended to be a recommendation based on the level of knowledge on the subject of transidentity. According to the introductory text, one feels obliged to reduce discrimination and the depathologization of those affected. The outdated term “gender identity disorder” is no longer used according to international guidelines. Instead, the words “gender incongruence” and “gender dysphoria” are used to describe the treatment-relevant suffering that can arise from incongruence.
Failure to treat can also cause harm
The experts emphasize the task of accompanying each case individually, fundamentally accepting and at the same time keeping an open mind. Treatment – whether psychotherapeutic or medical – must always be preceded by careful diagnosis by specialists. It should not be “about wanting to change gender identity,” as Sabine Maur, the Vice President of the Federal Chamber of Psychotherapists, said. After careful evaluation, it is important to do everything possible to ensure that young people feel comfortable with their bodies and their sexuality in the long term.
Some mental illnesses such as depression or anxiety disorders occur more frequently in young people with gender dysphoria, Maur confirmed. However, these are comorbidities; General assumptions about causal relationships should be avoided: “There are no mental illnesses in which gender dysphoria occurs as a symptom.”
The committee also devoted intensive attention to the topic of puberty blockage, i.e. the administration of medication at the beginning of puberty, in order to gain more time for subsequent decisions. Long-term data on effectiveness and safety are missing here. However, the pediatrician and hormone expert Achim Wüsthof from the Endokrinologikum Hamburg referred to the decades of experience that has been gained with these medications in children with premature puberty.
It is therefore still unclear whether the treatment also influences bone density beyond the acute treatment phase. However, there is no evidence that puberty blockage has a negative impact on brain development. “But at the same time, we have very concrete evidence that people would suffer greatly if we actually forced them through this unwanted puberty.”
One should never forget that these decision-making processes involve young people in serious crisis situations, emphasized Dagmar Pauli, deputy director of child and adolescent psychiatry at the University Hospital of Zurich. Failure to seek treatment can also cause harm. Refusing treatment on principle because of concerns about possible side effects could be medically and ethically inappropriate, added ethicist Claudia Wiesemann.
Compared to international guidelines, the new recommendation is more comprehensive and specific, also because it can address the care situations in German-speaking countries in more detail. The example of England makes it clear how different the circumstances are, said Dagmar Pauli. Many things that are now being recommended there have been implemented in this country for a long time.
But there are also differences. The fact that puberty blockers, as is currently planned in England, can only be given as part of studies is not legally possible in Switzerland, for example, because people there are not allowed to be forced to take part in studies. However, the popular headline that puberty blockers will now be banned in England is not true.
The guidelines could be a real relief for those affected
According to the experts, there are definitely cases in which young people change back to their original physical gender after corrective measures. However, this is rare with careful diagnosis. Achim Wüsthof said he had treated 800 young people over the past 15 years and experienced five detransitions.
Overall, the data situation on gender dysphoria in children and adolescents is “difficult,” says Wüsthof. There is no register, so cases are not recorded systematically. That’s why there is little reliable information on the question of how these people will fare in the rest of their lives. In terms of medical ethics, it is also hardly possible to carry out studies on children and young people in these crisis situations that meet the usual evidence criteria, i.e. in which one group is treated and another group is not. This also applies to many other areas of pediatric and adolescent medicine.
The new treatment guidelines are therefore based more on expert consensus and follow-up observations than on evidence from the study situation, even if all studies have been comprehensively reviewed, as the experts emphasize. For this reason, the new guideline, which was originally planned as a guideline of the highest quality level S3, is now published as an S2k guideline. The “k” stands for the structured process of reaching consensus in which the participants wrestled with each other. In the paper now available, this consensus is between 75 and 100 percent for the individual points, which the authors rate as high.
Claudia Wiesemann explained that the hope is that the guidelines will not only give those treating them more security, but also the children and young people affected and their parents. At the moment they are often in a difficult situation. They would have to search for a long time before they found professional contacts, and they often came across people with little training who didn’t know where to refer them. Wiesemann hopes that the guidelines will represent “a quantum leap in care” – and a real relief for those affected.