Originally published by Genspect
I had to suppress a shudder as I read through some of the outcome measures that will be used to assess the success or failure of the NHS PATHWAYS puberty blocker trial. The trial protocol, published last week, lists all the standard mental health measures you would expect – validated scales for depression and anxiety that are nothing out of the ordinary. But then there are the scales intended to measure symptoms of so-called ‘gender incongruence’, the deliberately vague, activist-created ICD-11 diagnosis adopted by the trial.
These are grisly questionnaires asking children as young as ten to rate their feelings about their body parts one by one: “How do you feel about your chest, your facial hair, your penis, your hips, your shoulders, your vagina?” “On a scale of 1-10, how satisfied are you with your genitals?” Each organ is presented for consideration as a dissociated part, detached from the body and the person as a whole. Young people are encouraged to ruminate deeply on feelings of bodily discomfort, while some of the questions hint at the tantalising possibility that medical solutions may be available to transform those body parts that they dislike.
The Body Image Scale – Gender Spectrum (BIS-GS) is a measure that will be used in the trial, and it explicitly asks children to “rate whether they would want to change each body part if it were possible through medical or surgical treatment”. This feels dangerously close to just asking children which cosmetic surgeries they think they might like and then acting as though their answers represent a meaningful scientific measure.
The problem with the puberty blocker trial is that, regardless of how gender distressed young people feel about their body parts, they cannot change them with medical and surgical interventions without suffering huge detriments to their physical and mental health. Tucked away towards the end of the trial protocol are long lists of the side effects caused by puberty blockers: hot flushes, weight gain, dizziness, sexual dysfunction, low mood, fatigue, sweating, genital pain, anxiety, vaginal bleeding…the list of known, documented harms goes on and on.
The trial protocol briefly mentions that 98% of children who take blockers go on to take sterilising cross sex hormones, but makes no effort to grapple with what it means for medical professionals to render physically healthy children infertile simply because they are distressed about their sexed bodies. The measures contained in BIS-GS tell us nothing of use, because it simply doesn’t matter if children would like to change their bodies when the known consequences of doing so are infertility and sexual dysfunction.
Lies We Tell to Children
As I read through the trial protocol, I was reminded of a recent interview between Genspect founder Stella O’Malley and Baroness Claire Fox. A major theme of their discussion was how adults should respond to the passionate intensity of gender distressed young people, many of whom believe that their lives depend on accessing puberty blockers and cross sex hormones. Baroness Fox said:
“When teenagers say ‘I want this’, as a teacher, and as an adult, and as someone with young people in my family, I want to say, in some instances, ‘Absolutely no. You can’t do that. I personally don’t think heroin is a good idea, don’t take it… We have developed a society that takes seriously the threats of young people that if they don’t get what they want it will destroy their lives. Instead of us standing up to them – because we love them and we know it’s the wrong thing – we say ‘Oh my god, if I don’t give in, something awful might happen’. And that is a betrayal of those young people.”
The puberty blocker trial is surely the apex of that betrayal, an iconic example of adults failing to safeguard children, capitulating to impulsive youthful demands that have irreversible, lifelong consequences. Beyond the intense preference for puberty blockers expressed by gender-dysphoric young people, the protocol can articulate no clear rationale for medicalising still more gender-dysphoric children. At some points, it suggests that puberty blockers may buy ‘time to think’, at others that they could improve mental health or gender dysphoria. But these rationales are long-debunked artifacts of a time before the Cass Review, before the University of York systematic reviews showed that they were unsupported by evidence. They are a smokescreen for the fact that the trial is going ahead largely because clinicians and policy makers lack the courage to confront the toxic rhetoric of activists, who have convinced so many young people that the medical transition pathway that starts with puberty blockers is both ‘lifesaving’ and virtually risk-free.
The outcome objectives described in the trial protocol reflect this adult reluctance to meet the preferences of distressed young people with a sober assessment of potential harms. While the trial’s primary objective is to assess the risks and benefits of puberty blocking drugs, its secondary objective is to establish why gender distressed young people want to take them in the first place. This inverts the ethical issues posed by the puberty blocker trial, getting the question completely back to front. The harms of blockers are well established (as demonstrated by the endless lists of side effects), we have no clear-cut evidence of benefits, and gender distressed young people, though they may be experiencing intense psychological distress, are physically healthy and not suffering from a life-threatening condition.
In these circumstances, as Genspect’s Statement on Restoring Clinical Clarity sets out, the desire for experimental body modification needs to be recognised as pathological, a drive to engage in a form of medicalised self-harm. If we wish to help gender distressed young people, we must get to the root of why they feel compelled to take such a radical risk with their health, not collude with them in seeking out dangerous puberty-blocking drugs.
The Biggest Blind Spot of All
Earlier this year, the Guardian reported that, “several thousand children and young people in England who are questioning their gender identity may opt to participate in the trial”. While I am relieved that the final trial protocol states that only 226 children will be unnecessarily placed in harm’s way, I’m also painfully aware that tomorrow’s detransitioners will be among them.
Shamefully, the trial protocol says nothing about detransition or regret. Those two words are not mentioned even once in the trial protocol, even though they are perhaps the best known and most predictable adverse outcomes of the medical transition pathway that commences with puberty blockers. Particularly when someone has been transitioned at an early age, regret occurs gradually, with the average time from medicalisation to detransition being 7-11 years. Running for just two years, the PATHWAYS trial will not be able to track how many of the children it medicalises will go on to experience regret and detransition. It is incapable of measuring the most obvious harm it will cause.
The trial protocol also shows that the NHS has given up on the detransitioners it has already created. Genspect has long been arguing that the health service has a moral responsibility to complete the data linkage study before exposing a new cohort of young people to the documented harms of blockers. Recommended by the Cass Review, the data linkage study would follow up on what has happened to the estimated 2,000 gender distressed young people who were put on puberty blockers by the disgraced NHS Tavistock Clinic. We know there are harmed patients among them, because some of Genspect’s Beyond Trans service users are detransitioners who were first set on the path to irreversible medical harm by a prescription for puberty blockers issued by the Tavistock. The data linkage study is our only way to secure long-term outcome data, something the trial protocol itself admits PATHWAYS will not provide.
The trial protocol effectively claims that completing the data linkage study is pointless. It sees no benefit in trying to understand the experiences of irreversible medical harm and regret that Beyond Trans service users share with us in our weekly peer support meetings. The Tavistock did not collect ‘standardised data’, and the protocol therefore argues that the data linkage study, “would not provide alternative evidence” about the effects of blockers. This is an implausible and unforgivable excuse. A lack of standardised data does not mean there is no data to learn from at all. The PATHWAYS trial has access to a whopping £10 million in funding. If a mere fraction of that sum were devoted to carefully tracking the trajectories of previous Tavistock patients, we would undoubtedly learn something pertinent about the risks and benefits of proceeding with another puberty blocker trial. The NHS’s refusal to do so, and its reckless drive to place still more children in harm’s way, will be felt as an acute betrayal by detransitioners everywhere.
It’s Not Too Late
Over the coming months, Genspect will continue to do all it can to prevent the PATHWAYS trial from going ahead and endangering more vulnerable young people. We are proud to support detransitioner Keira Bell in bringing a judicial review against the trial, and we will be producing an updated version of our report, Ethical and Practical Challenges for the NHS Puberty Blocker Study, highlighting the many ways in which the PATHWAYS trial protocol fails to address the most urgent questions of ethics and safety raised by the use of blockers.
In the meantime, we asked Beyond Trans service users who have taken puberty blockers to share their views on the trial and their messages to young people considering taking part. Their voices and experiences represent the most powerful rebuttal of the unevidenced claims and assumptions inherent to the trial, and we urge you to share their words on social media using the quote cards below.
Carrie Clark is a member of the Killarney Group and sits on Genspect’s Advisory Board.
