The Swedish Medical Ethics Council (Smer), issued a statement on April 26th 2019, calling for urgent research into the treatment of gender dysphoria in children and adolescents. Prompted, it would seem, by ‘conflicting opinions’ on how best to manage the increasing numbers of young people seeking support with their gender variance. On the surface, Sweden’s approach seems reasonable.
However, while research undeniably plays a crucial role in increasing our understanding, we should be wary of withholding established treatment regimens whilst further studies are undertaken.
The fact is that medicine and clinical care often evolve faster than research can support; and medical and surgical advances are supported by evidence of good clinical outcomes, as well as hard data.
Over the past 10 years, awareness of gender incongruence has increased exponentially and so has the associated language. Today, anyone experiencing discomfort around their gender can access a wealth of information via many sources. They can take this information to their GP and start the pathway to get the help they need.
As more people come forward for help, the more apparent it becomes that this is not as unique a phenomenon as it was once considered to be. Encouragingly, this leads to more patients being treated, treatment pathways becoming clearer and patient outcomes improving. And this brings with it a desire for more concrete ‘evidence’ that treatment is safe.
Compounding this, among those who experience gender variance, there will be young people. Trans adults were, after all, children once. And this is where things become a little more emotive from an ethical perspective. How can we trust that the young person in question can understand something as complex as gender and the implications of taking medication, the irreversible effects of which we fear, but the young person craves.
So we turn to research to support current best practice. But research, by its very nature, takes time. Where does that leave us?
Well, it isn’t quite as bleak as the moral panic might have us believe. Firstly, there is plenty of excellent clinical research based on actual patients, as well as sound advice, from leading experts in the field including the Endocrine Society.
Their guidelines state the following: “We recommend treating gender-dysphoric/gender-incongruent adolescents who have entered puberty at Tanner Stage G2/B2 by suppression with gonadotropin-releasing hormone agonists. Clinicians may add gender-affirming hormones after a multidisciplinary team has confirmed the persistence of gender dysphoria/gender incongruence and sufficient mental capacity to give informed consent to this partially irreversible treatment.”
WPATH agrees that: “Refusing timely medical interventions for adolescents might prolong gender dysphoria and contribute to an appearance that could provoke abuse and stigmatization. As the level of gender-related abuse is strongly associated with the degree of psychiatric distress during adolescence (Nuttbrock et al), withholding puberty suppression and subsequent feminizing or masculinizing hormone therapy is not a neutral option for adolescents.”
The good outcomes for gender variant youth that have already been measured are: increased mental health scores, better social integration, happier children and young people, better integration into education. Basically, an increase in life satisfaction and a decrease in depression of the individual in question.
We are conditioned to want statistics, to be able to evidence our decisions based on the outcomes of large numbers of people, but the fact is that these simply don’t exist in the way scholars are requesting them. Indeed, in order to provide the crystal clear evidence that might enable us to make a categorical decision with utmost certainty (which if you have ever met another human being is problematic in and of itself), we would have to do what we call ‘randomised controlled trials’.
This would involve taking a large number of gender variant people (1000 plus), randomly allocating different treatment protocols and comparing the results. Neither the doctor nor the patient would know to which treatment group they had been allocated. However, it wouldn’t take long for it to become apparent if one group was receiving a placebo, one group had puberty blockers and one had gender affirming hormones. Of course there are also significant ethical implications involved in such a study, as we already know that treatment results in better outcomes for gender variant patients, so those for whom treatment was withheld would knowingly suffer the adverse effects.
You can’t withhold treatment that is known to be effective from patients with cancer, diabetes or asthma. And you can’t do it to trans people.
Patients are asking for care, they are asking for support, blockers, hormones and, in some cases, surgery. If they have shown the capacity to understand the treatment and give their consent, is it the role of the medical professional to decide whether they should withhold the treatment?
Medicine is a process of weighing up the risks and the benefits. A doctor’s job is to help that patient understand whether the course of treatment they are seeking will result in better outcomes, than choosing not to have that treatment. In the case of gender variant patients we know that their outcomes are improved by the patient being listened to, by them being believed and by them receiving the interventions that are currently available; while more research would certainly be nice to have, no amount of research will negate the validity of first hand experience, of which we have plenty of evidence.
Excellent research projects are underway but we mustn’t let patients suffer while we wait for the results.