High Court Weighs Up Treatment and Informed Consent in Children with Gender Dysphoria

Becky McCall

October 09, 2020

LONDON—The risks and benefits of puberty blockers and whether a child or young person with gender dysphoria (GD) is competent to give informed consent to medical treatment was examined in a 2-day judicial review hearing at the Royal Courts of Justice this week. 

Under review was the Gender Identity Development Service (GIDS) of the Tavistock and Portman NHS Foundation Trust, London, for referring young people with GD to endocrinology services for puberty blocking treatment, and the degree to which truly informed consent is given by such young patients. The outcome of the review is pending further submissions and discussions by the court.

Keira Bell

Lasting 2 days, the case was brought by Keira Bell, 23, who transitioned at age 16 but who now identifies as female, and 'Mrs A', the mother of a 16-year-old girl with autism who is on the waiting list for treatment at GIDS.

Together with witness, Susan Evans, a psychotherapist who resigned from GIDS because she felt so 'deeply concerned' about the fast-tracking of young people into medical treatment, the pair crowd-funded the judicial review.

Susan Evans

Informed Choice

Jeremy Hyam QC, barrister for the pair claimed: "A child's supposed consent to the prescription of hormone blockers is not valid informed consent because a child going through puberty is not capable of properly understanding the nature and effect of hormone blockers… and arrive at an informed choice.

"Our case is that this is a fairy-tale," he stressed. "Nobody can sensibly think of a child who can give informed consent to treatment of dubious benefit likely to result in loss of fertility, sexual function, and life-long need for medication." The claim calls into question the lawfulness of the [GIDS] service, Mr Hyam added.

The claimants' barrister also argued that children who start puberty blockers most often go on to take cross-sex hormones, with peer-reviewed evidence suggesting that "96.5%-98.2% invariably progress to cross sex hormone treatment".

Mr Hyam also asserted that in the absence of any statutory safeguards, a court should decide whether hormone blocking treatment should go ahead, or not, in any particular individual's case. This, he said, is in line with the usual approach taken by the courts to sensitive areas of medicine involving children.

For the defence, Fenella Morris QC, who represented the Trust, argued that: "Puberty blockers are safe and reversible with well-established history." Regarding competence and consent, she said: "There's continuous monitoring and screening of young people [at GIDS] to ensure they have sufficient understanding of competence and consent."

Ms Morris also said that at the heart of Mr Hyam's argument proposing that properly informed consent cannot be given by a child was "a radical proposition that would impose on a certain group of children and young persons a blanket exclusion from the established law of England and Wales concerning consent to medical treatment".

GIDS Specialist Assessment Prior to Endocrinology Referral 

Referral to GIDS, an NHS England service, is made when young people are believed to have GD - an individual's experience of a mismatch between their biological sex and their gender identity.  According to the GIDS website, the service 'provides specialist assessment, consultation and care for children and young people in order to address their distress arising from a mismatch between their natal sex and their gender identity, and to provide them with appropriate care and support'.

If deemed necessary and consented to, the appropriate care and support includes referral to endocrinology services, most often for medical treatment, which can entail the use of hormone blockers and/or cross-sex hormones.

But the past decade has seen increasing strain on the system with GD referrals from the community to GIDS rising from 97 in 2009, to 2590 in 2018, and the profile of referrals changing from mostly natal boys to natal girls. The latter has increased from 42% of the total in 2009 to 76% in 2019.

Ms Morris added that GIDS has a statutory obligation to help its patients improve their understanding of their GD and the potential treatments they might be given. "If a child says they don't understand what's happening then measures will be taken to improve understanding and then re-assess before any referral [to endocrinology] is made."

Assessment is not instantaneous, stressed Ms Morris, adding that: "The Tavistock enables the client and parents or carers to make an informed choice. There's a whole assessment process before moving to cross-sex hormones."

If patients are deemed suitable and informed consent is obtained, patients may start cross-sex hormones from the age of 16 years, after at least 12 months on puberty blockers.

The average age for referral from GIDS to endocrinology services is 15.4 years, said lawyers for the Trust. Figures from 2019-2020 show that more than half of referrals were of under-16s, and over a quarter were under 14 years. Of the total, 10 children were not referred from GIDS to endocrinology, and 161 were referred, reported Ms Morris.

"Younger patients had around 10 to 11 consultations before referral," she said. Furthermore: "Children aren't always referred for treatment, but might only be referred for assessment of stage of puberty."

Also, a younger client might have more appointments before referral, and parents are welcome to be involved in the consultation, she noted.

Referring to the witness statement of Professor Polly Carmichael, consultant clinical psychologist and GIDS director, Ms Morris said that it is normal for a young person to spend at least 18 months on blockers by the age of 15. "This provides time for more developed discussions. Admittedly with a 10-year-old, conversations will be more limited." Three children aged 10 had been patients at GIDS.

"[Such discussions] are made relevant and salient to their understanding of longer-term treatment and whether they want to start cross-sex hormones at age 16. A 10-year-old's consultation will be tailored to their age and puberty blockers… but it's Tanner stage 2 [a sexual maturity scale] rather than age that is important," she said.

John McKendrick QC, representing University College London Hospitals (UCLH) NHS Foundation Trust, and Leeds Teaching Hospitals NHS Trust, the sister service to the Tavistock, said that, "For a child with GD there is no [medical] alternative treatment to blockers, which treat the acute distress of the GD. Our aim is to reduce suicidal ideation and that is achieved this way."

The veracity of the claims about suicidal ideation were questioned by the claimants' lawyer.

Mr McKendrick added that while on puberty blockers, young children will mature over the following 4 years [before a decision at age 15-16 years around use of cross-sex hormones] and have "a better understanding of how they feel about their body. This is a long experience of life and relationships, except that it is in an altered way due to an altered puberty".

Regarding the need for a court order before starting a child on puberty blockers, Mr McKendrick said: "If everyone agrees then it is not necessary to make an application to the court.

"We say dialogue is at the heart of what takes place. These endocrinologists are not providing hormones to children and adolescents for no good reason."

Informed Consent and Competency in Children

According to GIDS, as reported by Medscape Medical News previously, informed consent to treatment must be given by the child and one or both parents for patients who are 16 years of age or younger, except under exceptional circumstances. Patients older than 16 years of age who are deemed to have sufficient understanding of the treatment offered may give their own consent.

Mr Hyam's challenge rests on the medico-legal concept of Gillick Competence, which refers to valid consent that can be given by a child under 16 without parental permission or knowledge, provided that the child fully understands what is involved, including effects and risks of any medical intervention, its chances of success, and alternative options, and providing the treatment is deemed to be in the child's best interests. He also asserted that giving puberty blockers and cross-sex hormones was unlawful because there is a lack of evidence to support their use in GD, but there was evidence the drugs can affect fertility, sexual function, and can decrease bone density, he said.

The claimants' lawyer also argued that the current 'consent' is not valid informed consent because clinicians are not adequately trained to advise children about the effects and side-effects of hormone blockers.

In a witness statement and referring to what she termed as a "brash decision", Ms Bell said: "I couldn't weigh the loss of experiences, but this should have been obvious to the treating physicians." Mr Hyam noted that Ms Bell experienced hot flushes, cognitive dysfunction, joint issues… at the time, and later problems linked to sexuality. "Her vision of becoming a male that she had as a younger child was 'a fantasy'."

Defence lawyer Ms Morris, pointed out: "If [the young people] are able to consent, and wish to continue blockers, they can have them for a few years, can stop and restart and over this time, work is done to expand their understanding and their life experience increases, and this is made relevant and salient to their understanding of longer-term treatment and whether they want to start cross-sex hormones at age 16."

Referring to Prof Carmichael's statement, Ms Morris said that an additional layer of scrutiny is provided for under-15s. "These young people won't be referred unless considered by at least two psychosocial consultations, with explanations of possible treatments, fertility and family-planning. Tavistock will only proceed with referral if there is a consensus. If everyone has agreed [on the way forward] then there is no issue for any court."

Writing in the 'I' newspaper, Nancy Kelley, CEO of Stonewall, a lesbian, gay, bisexual and trans charity, said that the possible removal of the right to give informed consent in under-18s would not only affect trans people's ability to get hormone blockers. "It could throw into question all young people's ability to access wider healthcare treatments, like contraception and abortion services.

"If we also chip away at the idea that children and young people know what's best for them, we open the door towards eroding Gillick Competency. Gillick is a cornerstone of children and young people's rights, and helps ensure young people can access the healthcare service they may need, including abortion, contraception or sexual health services." 

Initiation and Effects of Puberty Blockers, Cross-sex Hormones

According to lawyers for GIDS, the World Professional Association for Transgender Health (WPATH) says the purpose of blockers is: "To alleviate distress and to allow more time for counselling, consideration, and more scaffolding for decision-making."

Ms Morris pointed out that treatment with gonadotropin-releasing hormone (GnRH) agonists (puberty blockers) does not inevitably lead to transition. The "true purpose of puberty suppressants was to expand the diagnostic phase, and ….to reduce the impact of surgery and give time for thinking".

"The goal of cross-sex hormones is not what drives the blocking of puberty." She emphasised that a child will not proceed to medical treatment if there is any concern about their suitability.

According to GIDS, the first stage of physical intervention is suppression of puberty using fully reversible hormone blockers for a minimum of 12 months, which provides time for gender exploration without the pressure of ongoing pubertal development. Then, when the young person reaches 16 years of age, the partially-reversible cross-sex hormone treatment may begin.

Mr Hyam argued that the purpose of providing hormone blockers is unclear and that: "All other forms of medical intervention are provided to treat physical injury or disease, or psychiatric illness. However, there is nothing physically wrong with children who have gender dysphoria."

He continued by saying that the natural assumption would therefore be that GD would be a mental health condition… but the defendant [GIDS] does not describe it in those terms.

A witness statement for Ms Bell and Mrs 'A', by Professor Stephen Levine, a psychiatrist from Case Western Reserve University, Cleveland, Ohio, USA, pointed out that there are multiple possible explanations for the ambiguity around the nature of GD. "There is no known biological cause of GD and so it is a psychiatric rather than a physical condition." Alternatively, GD could be seen as a result of various events in a child's life that could be treated through psychological therapy. Any response other than agreement by society and medical professionals is a violation of the individual's civil rights to self-expression, he said. Prof Levine views this as "not medical or scientific but political".

He also noted that the "extensive evidence before the court makes clear beyond doubt that the prescription of hormone blockers to children with GD is untested, controversial, and an innovative area of medicine which involves significant ethical questions".

A lawyer for Transgender Trend, a UK-based parent group that questions medical transition in children, highlighted that concerns were for those children whose GD would not have persisted, or resolved of its own accord. "But due to their treatment it does persist [longer] than it would otherwise have done. If they want to detransition they then have to go through the pain of detransitioning."

He added that the court: "Should be anxious to ensure that vulnerable children, for example autistic children, are afforded the full protection of the law – via competence and capacity and the requirement to have properly informed consent in any case." 

GIDS Own Study Remains in Peer-review at a Critical Time

A study conducted by GIDS, completed in 2019, that is currently undergoing the peer-review process before publication, was unavailable for this judicial review. However Mr Hyam noted that preliminary findings show that: "The suppression of hormones does not impact positively on the experience of gender dysphoria," and that "natal girls appeared to be more dissatisfied with their sex characteristics, and there was an increase in reporting of thoughts of self-harm or suicide by children in the study".

In summing up, Mr Hyam expressed his own dissatisfaction with the lack of publication of this GIDS study given its significance in the case. "Why not show the evidence from Professor Viner [Russell Viner, president of the Royal College of Paediatrics and Child Health, lead author]? To say Professor Viner is too busy with COVID does not stand up. The fact that the Tavistock have been conducting a study on their work, you'd think they'd present that to the court."

In conclusion, the three judges determined that further discussions, reading, and deliberations were needed and that a decision about the case would be available in due course.

Bell v. Tavistock held at the Royal Courts of Justice, London. 7 and 8 October 2020. Decision of the court is pending.

Image credits: Becky McCall/Medscape.

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