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'Yes, it's an experiment'
Norway joins the shift to caution on gender medicine
Medicalised gender change for young people is “experimental”, relying on “insufficient” evidence, and should be confined to a formal research framework, according to Norway’s independent healthcare investigator.
It is believed to be the first time that a public health agency in Norway has sounded the alarm about poorly evidenced medical treatments for the distressing condition of gender dysphoria.
In a landmark report, the Norwegian Healthcare Investigation Board says: “We know little about the long-term effects of puberty blockers and side effects of treatment with [opposite-sex] hormones.
“Patients must be informed about this, and patients must be able to understand the consequences of the choices.”
But the board says it is “unclear” what is required to conclude that a young person is mature enough to consent to the hormonal and surgical interventions sought by a rapidly increasing number of children and adolescents who identify as transgender or non-binary.
“There is no Norwegian comprehensive overview or systematic mapping of the patients’ past history, [of] how many are refused [treatment], who withdraws during the course of treatment, [who] completes the treatment or how patients with gender incongruence and gender dysphoria fare after treatment,” the report says.
(Gender incongruence and gender dysphoria both involve a feeling of conflict between ‘gender identity’ and the body, but the former diagnosis does not require distress.)
The board’s report, titled “Patient safety for children and young people with gender incongruence”, was welcomed by “Oskar”, not his real name, a father involved in the parents’ support group Gender Identity Challenge Skandinavia (GENID).
“For the first time [in Norway], an official public agency is sounding the alert on the lack of good evidence for the treatments being given to young people, and they are advising strong restrictions,” he told GCN.
“It doesn’t mean that Norway has decided to change, but it is sort of an indication of changes coming.”
The board’s report acknowledges the more fully developed shift to caution in Sweden and England. Finland moved first, in 2020, with new guidelines discouraging medical transition for the troubled, adolescent-onset patients who dominate today’s gender clinics across the developed world.
A spokeswoman for the Society for Evidence-based Gender Medicine said, “Norway has followed in the footsteps of its Nordic neighbours Sweden and Finland, as well as England, by calling out the experimental nature of youth gender transitions.
“We simply do not have the evidence to support the widespread use of these risky and often irreversible interventions in general clinical settings.
“It is notable that a growing number of progressive counties are rejecting the World Professional Association for Transgender Health’s ‘standards of care’ that promote medicalisation, in favour of developing their own, much more cautious evidence-based guidelines.”
Oskar, who was among those consulted during the inquiry launched last year by Norway’s healthcare investigation board, said the country’s political class and the national health service had been heavily influenced by gender-affirming activists.
Norway has radical laws allowing children to change their legal gender, as well as a punitive “hate speech” code that has been used to target lesbians publicly declaring that men cannot be women.
But the board, known by its Norwegian initials Ukom, has an independent mandate to investigate serious “adverse events [or] concerns” in healthcare that pose a risk of harm to patients.
In 2022, the board was contacted by relatives of patients aged 16-21, and the concerns included not enough information on treatment effects and side-effects, and insufficient follow-up of competing, non-gender diagnoses that would point to treatment options other than “gender-affirming” interventions.
The board’s March 9 report, given coverage in Norway’s biggest circulation newspaper Aftenpoſten, recommends —
the revision of Norway’s gender-affirming treatment guidelines, which “may pose a patient safety risk”
a systematic review of the evidence base for treatment, drawing on similar reviews conducted in other countries
research to strengthen the evidence base for youth gender dysphoria care
clarification of consent, taking into account that children and adolescents “are not fully developed physically, mentally, sexually or socially”, while hormonal treatment can threaten future fertility
an emphasis on the need for parents to be kept in the loop, given that they “are the closest caregivers and anchors in a situation that is very demanding for the child himself and his siblings and parents”
the reorganisation of healthcare to reduce waiting lists and ensure that the non-gender problems of gender service patients are not ignored
a national medical register to monitor the quality of care given to young people with gender dysphoria
Video: Gender change at age 6
Not just gender issues
The national specialist gender service at Oslo University Hospital had received referrals of 915 people (268 of them children), according to its 2022 annual report.
Of the children, 198 were natal females. A previous report from the service said that 75 per cent of referrals had a mental illness, and about 20 per cent had autism spectrum disorder, ADHD/ADD or Tourette’s.
The healthcare investigation board’s report says the knowledge base is “deficient both nationally and internationally” for the new, chiefly female teenage group of patients which began to emerge around 2010-15.
“The stability of gender dysphoria that occurs or is expressed in the teenage years is not known as there is a lack of follow-up studies,” the report says.
It says puberty blockers pose “unsettled questions”, including their effects on cognitive development.
“Unexplained side effects and long-term effects of both puberty blockers (hormone treatment) and gender-affirming hormone treatments are increasingly questioned,” the report says.
“[The board] recommends that puberty blockers and hormonal and surgical gender-confirmation treatment for children and young people are defined as experimental treatment.”
In a research setting, these treatments with unproven safety and efficacy would be “closely monitored”, ensuring “systematic collection of data for research and quality assurance.”
The board says that existing studies claiming benefits for gender-affirming treatments suffer from short follow-up, small sample size, patient dropout, lack of control or treatment comparison groups, and doubtful applicability to today’s adolescent-onset patients with multiple non-gender problems.
“There is little and uncertain data on how many regret [medicalised gender change], and [regret] is particularly relevant for the most invasive treatments such as puberty delay and hormonal and/or surgical gender-confirmation treatment,” the report says.
The board takes issue with the “transition or suicide” narrative repeated by gender clinicians and trans rights activists.
The report quotes research on suicide risk for trans-identifying patients in Sweden:
“The suicide risk was significantly higher than in the general population, but at the same level as the suicide risk in common mental disorders such as depression, bipolar disorder and autism. Since these mental disorders are so common among people with gender incongruity, it is not possible to determine whether the increased suicide risk is due to gender incongruity itself or is a consequence of mental disorders. There are also no studies that provide evidence that the risk of suicide is reduced as a result of gender-affirming treatment, or that the risk of suicide increases if gender-affirming treatment is not given.”
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The report is scathing about the Norwegian Directorate of Health’s 2020 guideline for gender healthcare, which the board says should be revised following a systematic review of the medical literature.
“[The current guideline] concentrates on organisation, equality and rights … [But] we consider that deviating from the requirement to develop evidence-based guidelines has created room for uncertainty and conflicting expectations,” the board says.
The board says the guideline was based mainly on “experience-based consensus and user participation/user knowledge” [or lived experience], but the material in the guideline’s “experience-based knowledge base [was] not documented, transparent or verifiable.”
The board says it was told of concerns for patient safety because, consistent with the international trend for “depathologisation”, the guideline did not make psychological assessment a precondition for medicalised gender change.
“[Lack of mental health oversight] can mean that various psychological burdens and diagnoses are not picked up, which means that children and young people do not get the comprehensive help they need,” the report says.
“In Norway, there has not been a systematic summary of knowledge in the field [of youth gender dysphoria care], [nor] updated assessments of recent foreign summaries of knowledge, [nor] a complete method assessment of puberty blockers and gender-confirmation treatment with hormones and surgery for children and young people.”
The board says the national gender care guideline is vague, unclear and open to competing interpretations on key issues such as a child’s capacity to consent to life-altering treatment, and the rights of parents to information and involvement in the assessment and treatment process of their children.
The board points out that the current guideline “allows for information to be withheld from the parents even if the child is under 12 years of age, [yet] it is specified in the guideline that children under 12 cannot consent to healthcare.
“Our investigation finds that the guidelines provide too much room for interpretation regarding who can do what, how, where and when,” the report says.
The board says this leads to variation in how medical interventions are offered and contributes to disagreement among professionals and patient organisations.