What are the uncertainties that health professionals need to address in medical interventions for gender dysphoria in children and adolescents?

All medical interventions (whether diagnostic labels, prescribed chemicals, or surgical invasions on the body) have harms. Only some have benefits. Normal discussions about the safety and effectiveness of therapies try to determine what ‘works’, for whom, when, why and for how long.

What do health professionals do?

All healthcare professionals are trained and regulated (meaning they have to be accountable for their actions to retain the trust of the general public (Royal College of Physicians, 2005)), with systems of continuing education.  There are competing ethical ‘systems’ which philosophers and bioethicists call upon when looking at and trying to help morally evaluate new possibilities. However, there are also strict legal obligations on regulated healthcare professionals and strong codes of professional practice (GMC, 2019). In the UK, the NHS is a ‘universalist’ service, i.e. being based on need and treating all patients as equitably as possible. It is tax-funded, though patients can pay for care in the private sector. In theory, the standards should be the same in both sectors, but in practice they are not.   

All medical interventions (whether diagnostic labels, prescribed chemicals, or surgical invasions on the body) have harms. Only some have benefits. Normal discussions about the safety and effectiveness of therapies try to determine what ‘works’, for whom, when, why and for how long.  Research looks at the sizes of benefits and harms, using mortality and quality of life as well as other measures in standard ways to assess these matters.

Although many issues are ‘settled’ (eg the use of insulin in diabetes, or hip replacement for arthritis), some discussions about standard ways of assessing medical involvement within healthcare become fraught or use biased data, especially if there are strong financial interests, which is why independent methods and guidelines have been developed (MAGIC (Making GRADE the Irresistible Choice), no date; NICE, no date; Higgins et al., 2021).

In addition, some of the same interventions (labels, drugs, invasions on the body) fall outside medicine depending upon how they are used.  Frequently, there are disputes about what is or is not legitimate for medicine, and whether it is even a ‘category error’ to put an item into the medical arena (for example, assisted suicide or climate change). Is identity the proper purview for medicine?  For example, is it right for doctors to perform male infant circumcision for religious identity reasons? There are many arguments about ‘mission creep’ in medicine seen in discussions about the ‘medicalisation’ of ordinary life and its distresses that then gets ‘labelled’ (eg in the Diagnostic and Statistical Manual (‘DSM-5 Diagnostic Classification’, 2013)) so people ‘need’ or ‘get’ some kind of ‘treatment’ with its associated cost (and rewards for practitioners).

All clinicians must operate within a human rights framework, respect their patients’ views and treat them with dignity.  There are few (if any) ‘rights-based’ claims to demand medical intervention for a personal identity issue. Clinicians must operate within their national legal systems although there are examples of dilemmas where their ethical duty (eg not to be complicit with torture and human rights abuses of prisoners of conscience etc) might be constrained (World Medical Association, no date). 

What do health professionals know about sex and gender and how do they know it?

Sex, determined at conception, is recorded on the birth certificate. Gender is a powerful system of social norms attached to sex but widely divergent across time, geography and individuals (see FAQ What are sex and gender and what is the difference?). Gender dysphoria is an uncommon, distressing and increasing phenomenon. There are significant difficulties in providing high quality assessment and treatment for young people with gender dysphoria, let alone their associated co-morbidities (see FAQ: What is gender dysphoria?). The lack of clinical resources in over-stretched Child and Adolescent Mental Health Services (CAMHS) is a serious concern, especially post pandemic. 

CAN-SG supports calls for better care of young people as a priority. 

What are the gender services?

Many medical and surgical interventions that have been used in adults are now being used on young people. The long-term effects of hormones used to treat gender dysphoria are thought to be significant, although there is uncertainty and dispute about whether medical interventions are linked to higher mortality in trans people (de Blok et al., 2021). One medical pathway, called gender affirmation, is claimed to be effective but little data exists for this assertion (Heneghan and Jefferson, 2019; NICE, 2021b, 2021a).  

Long NHS waiting lists are accompanied by a thriving private sector and a resort to crowd-funding, e.g. for mastectomies. In the UK, the Tavistock Gender Identity Development Service (GIDS), had 51 referrals in the year 2009 and the majority of patients referred were young boys (de Graaf et al., 2018). In 2020-21, there were 2,383 referrals, the majority adolescent girls; of the 1,985 patients aged 12-18 referred to GIDS that year, 70% were female (GIDS, 2021). There has been a 4,570% increase from 2009 to 2020-21 for the total annual number of referrals to GIDS. For adolescent girls this figure is 9,110%, and for adolescent boys it is 2,420%.

What is the evidence?

Many young people explore and express identity in many ways, which we encourage. The brain undergoes an important developmental phase from 11-25 years, when the adult brain is forming (see FAQ How does adolescence affect decision-making?). Interrupting or diverting this process may impede the ability of the young person to develop a mature and stable personality. Some animal work has shown cognition changes (Hough et al., 2017). Puberty blockers can cause stunted growth, decrease in bone density and bone mass, and are likely to have an impact on the developing brain of adolescents. They are not being used as a ‘pause to think’: in the UK 98% of young people who are prescribed hormone blockers go on to take cross-sex hormones (Carmichael et al., 2021).  This formed part of the basis of an initial legal decision in Bell v Tavistock that consent would have to be taken for the whole pathway at its outset. The judicial review was overturned on the basis that medical regulators, rather than the law, ought to be involved in oversight (EWHC 3274, 2020; EWCA Civ 1363, 2021). Nevertheless, it is obvious good practice that discussions around consent to start a pathway with 98% progression to a second stage ought to incorporate those outcomes.

It is a general principle that drugs (especially ones with psychoactive effects) should be given at the smallest dose for the shortest time. Thus very good evidence would be expected to support an intervention proposed to be life-long. There are sincere, and principled, differences of opinion as to whether children need encouragement or protection from life-altering medical interventions. All interventions might have life-prolonging or shortening effects. Claims, such as life-saving from suicide prevention, are not proven to the high standard that we have expect and become used to (say, with childhood cancers that have improved from very high to low death rates thanks to successive randomised controlled trials (RCTs) that have proven the benefits:harms). It is unlikely that any developing child could fully understand foregoing adult function (like sex and fertility).

CAN-SG believes these matters can, and should, be evidence-based and tested.  Unproven, experimental interventions should only be offered to children and young people if done within the context of randomised, controlled trials. 

What don’t we know?

The art of medicine lies is the handling of uncertainty, and the science lies in the development of understanding, technologies and interventions in the face of these uncertainties. The COVID-19 pandemic has illustrated the best and worst of high and low quality medical research.

Clinicians have to be honest, so that we can move forward from simplistic models developed in isolation in a special interest sector, to better models that ‘work’ for more people and are accepted by the healthcare community at large. 

We do not understand the causes of gender dysphoria. That may not matter of itself, but understanding causal pathways is the bedrock of healthcare, and especially determining the mechanism of action for invasive interventions. We do not know whether, how, by how much, for whom and for how long any ‘treatments’ actually work as none have been formally tested in comparative studies.  Whilst there are strong believers in, and advocates for, the gender-affirmation model, there are also increasing reports of harms.

Answerable research questions 
  • What has led to the increase in younger people with gender dysphoria?  Why, in particular, do so many adolescent girls identify as male?
  • How does gender dysphoria relate to co-occurring mental health conditions such as depression and anorexia, neurodevelopmental disorders such as autism, and experience of abuse, neglect and sexual trauma?
  • How does gender dysphoria relate to the development of a homosexual orientation?
  • What are the agreed sizes of the harms and benefits of medical interventions, in the short medium and long term? This information is required so we can develop shared decision aids for patients and anticipate health needs in later life. 
  • In turn, this requires understanding what are the long-term effects of hormone blockers and the long-term effects of cross-sex hormones both in animal and human studies?

While there is great objective uncertainty, we believe that people committed to promoting good health around the world should participate in large scale, methodologically robust, multi-centre studies, including randomised controlled trials, to answer important questions in the ways that develop sound, continuously improving evidence bases just as are found in other parts of healthcare.

Some clinicians are fearful in the current environment, as exploring or questioning a young person’s beliefs and feelings about their gender could lead to accusations of transphobia, or of practicing conversion therapy. 

What does CAN-SG want? 
  • Agreed terminology, and monitoring of both sex and gender in all healthcare settings and all healthcare data.
  • Better education for young people and schools about sex, gender and sexuality development, alongside recognition of the twin needs for young people to experiment and take risks, as well as be protected and safe when doing so.
  • More tolerance for the variety of ways people live their lives that do not impose on others (“live and let live”). Increased acceptance and support for young people who are gender non-conforming. 
  • Recognition that closer analysis of an ideologically based trans-affirmative approach does not have a sound clinical research base. Clarification of the ethical underpinning of why any identity, subjectivity or lifestyle matter would be within the province of medicine so as to help clinicians understand the boundaries of their practice and not overstep or abuse their power.
  • Development of a range of effective therapies that can support young people who struggle with distress around their gender and sexuality. The development of policies and treatment programmes to support young people without medical interventions where possible, until they reach brain maturity.
  • Urgent nationally approved and overseen research programme to answer the numerous questions that have arisen in the field of gender dysphoria utilising a wide range of research methodologies. This is too important to leave to amateurs or those with vested interests in the findings. 
References:

de Blok, C. J. et al. (2021) ‘Mortality trends over five decades in adult transgender people receiving hormone treatment: a report from the Amsterdam cohort of gender dysphoria’, The Lancet Diabetes & Endocrinology, 9(10), pp. 663–670. doi: 10.1016/S2213-8587(21)00185-6.

Carmichael, P. et al. (2021) ‘Short-term outcomes of pubertal suppression in a selected cohort of 12 to 15 year old young people with persistent gender dysphoria in the UK’, PLOS ONE. Edited by G. L. Santana, 16(2), p. e0243894. doi: 10.1371/journal.pone.0243894.

‘DSM-5 Diagnostic Classification’ (2013) Diagnostic and Statistical Manual of Mental Disorders. doi: 10.1176/appi.books.9780890425596.x00DiagnosticClassification.

EWCA Civ 1363 (2021) Quincy Bell and Mrs A v. The Tavistock and Portman NHS Foundation Trust. Available at: https://www.judiciary.uk/wp-content/uploads/2021/09/Bell-v-Tavistock-judgment-170921.pdf.

EWHC 3274 (2020) R (on the application of) Quincy Bell and A -v- Tavistock and Portman NHS Trust and others. Available at: https://www.judiciary.uk/wp-content/uploads/2020/12/Bell-v-Tavistock-Judgment.pdf.

GIDS (2021) Referrals to GIDS, financial years 2010-11 to 2020-21, GIDS. Available at: https://gids.nhs.uk/number-referrals

GMC (2019) Good Medical Practice. Available at: https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/good-medical-practice.

de Graaf, N. M. et al. (2018) ‘Sex Ratio in Children and Adolescents Referred to the Gender Identity Development Service in the UK (2009–2016)’, Archives of Sexual Behavior, 47(5), pp. 1301–1304. doi: 10.1007/s10508-018-1204-9.

Heneghan, C. and Jefferson, T. (2019) Gender-affirming hormone in children and adolescents, BMJ Evidence-Based Medicine. Available at: https://blogs.bmj.com/bmjebmspotlight/2019/02/25/gender-affirming-hormone-in-children-and-adolescents-evidence-review/

Higgins, J. et al. (eds) (2021) Cochrane Handbook for Systematic Reviews of Interventions version 6.2. Cochrane. Available at: http://www.training.cochrane.org/handbook.

Hough, D. et al. (2017) ‘A reduction in long-term spatial memory persists after discontinuation of peripubertal GnRH agonist treatment in sheep’, Psychoneuroendocrinology, 77, pp. 1–8. doi: 10.1016/j.psyneuen.2016.11.029.

MAGIC (Making GRADE the Irresistible Choice) (no date) MAGIC: Evidence, Ecosystem, Foundation. Available at: http://www.magicproject.org

NICE (2021a) Evidence review: Gender-affirming hormones for children and adolescents with gender dysphoria, National Institute for Health and Care Excellence. Available at: https://arms.nice.org.uk/resources/hub/1070871/attachment.

NICE (2021b) Evidence review: Gonadotrophin releasing hormone analogues for children and adolescents with gender dysphoria, National Institute for Health and Care Excellence. Available at: https://arms.nice.org.uk/resources/hub/1070905/attachment.

NICE (no date) National Institute for Health and Care Excellence: Improving health and social care through evidence-based guidance. Available at: https://www.nice.org.uk/

Royal College of Physicians (2005) Doctors in society: medical professionalism in a changing world, Report of a Working Party of the Royal College of Physicians of London. London: RCP. Available at: https://shop.rcplondon.ac.uk/products/doctors-in-society-medical-professionalism-in-a-changing-world?variant=6337443013.

World Medical Association (no date). Available at: https://www.wma.net.