Puberty Blocking — can a child consent?

4 December 2020 by Marina Wheeler QC

A case about medical treatment for children experiencing gender dysphoria is bound to evoke strong feelings. So, in early October, when the parties in R (on the application of Quincy Bell and A v Tavistock and Portman NHS Trust and others arrived for the hearing at the Royal Courts of Justice, they found a buzz of press photographers and a throng of campaigners with placards.

Now the Divisional Court has delivered its judgment in this controversial and difficult case. On 1 December 2020, it substantially upheld the Claimants’ challenge to the practice of prescribing puberty-blocking drugs to children, some as young as 10, with gender dysphoria.

The first Claimant, Quincy Bell, was born female. At about 15 she was prescribed puberty blocking drugs (PBs) to halt the development of female sexual characteristics. Subsequently she transitioned to a male using “cross-sex hormones” and then underwent a double mastectomy. She told the court her doubts began before the surgery and she now wished to identify as a woman, reverting to the sex on her original birth certificate. “I made a brash decision as a teenager” she said, “… trying to find confidence and happiness except now the rest of my life will be negatively affected…transition was a very temporary, superficial fix for a very complex identity issue.”

The second Claimant was the mother of 15 year old with autism experiencing gender dysphoria whom she feared would be prescribed puberty-blockers.

The Claimants contended that prescribing these drugs to under 18s was unlawful because they lacked competence to give valid consent to the treatment, and were given misleading information.

“Gillick” competence, as formulated in Gillick v West Norfolk and Wisbech Health Authority [1986], remains the relevant test: the House of Lords ruled then that a girl under 16 could receive contraceptive advice and treatment provided she had sufficient maturity and intelligence to understand the nature and implications of the proposed treatment.

Whether a person under 16 is Gillick competent, the Divisional Court stated, will depend on their individual characteristics as well as the nature of the treatment proposed.

The Court considered expert evidence about the treatment for gender dysphoria. Puberty blockers can be prescribed from age 10 and comprise “stage 1”.  Stage 2 is the administration of cross-sex hormones – either testosterone or estrogen – which can be administered from age 16. Stage 3 is gender reassignment surgery available for people over 18.

The Court was plainly struck by the absence of any concluded, peer-reviewed study into the efficacy and long-term impact of the NHS treatment and in that sense it considered the treatment to be “experimental” and “innovative”. It noted that before June 2020, the NHS website described puberty-blocking as “fully reversible” but thereafter the communication read, “little is known about the long-term side effects of hormone or puberty blockers in children with gender dysphoria”.

Another important element of the case was the relationship between treatment stages 1 and 2. The Defendant’s case was that stages 1 and 2 are separate: a young person can come off PBs at any time and not proceed to taking cross-sex hormones (and so consent was required to stage 1 alone). But on the evidence, the Court thought this unrealistic. The Defendant had not collated data of its own, but evidence from the Netherlands suggested that all but 1.9% all those who started on puberty-blockers progressed on to cross-sex hormones, leading the court to conclude that “stages 1 and 2 are two stages of one clinical pathway and once on it is extremely rare for a child to get off it.”

The Court also found a lack of clinical consensus about the purpose of puberty-blockers. On one view, it provided “time to think”, but the Court saw it differently. In its view, taking puberty-blockers was “not a neutral process by which time stands still for the child.” During this time, it said, the child will miss “the physical and consequential psychological changes which contribute to the understanding of a person’s identity.” It noted “some evidence” that “for a significant proportion gender dysphoria resolves itself through adolescence”, while puberty blockers may solidify feelings of cross gender identification and increase the likelihood of their moving on to cross-sex hormones.

It follows, said the Court, that to achieve “Gillick” competence the child or young person would have to understand not simply the implications of taking puberty blockers but of progressing onto cross-sex hormones, namely that there may be significant, long-term potentially irreversible physical and psychological consequences.

In its Judgment, the Court set out the information which a child would have to be able to “understand, retain and weigh” in order to lawfully consent to treatment:

1. the immediate consequences of the treatment in physical and psychological terms;
2. the fact that the vast majority of patients taking puberty blocking drugs proceed to taking cross-sex hormones and they are, therefore, a pathway to much greater medical interventions;
3. the relationship between taking cross-sex hormones and subsequent surgery, with the implications of such surgery;
4. the fact that cross-sex hormones may well lead to a loss of fertility;
5. the impact of cross-sex hormones on sexual function;
6. the impact that taking this step on this treatment pathway may have on future and life-long relationships;
7. the unknown physical consequences of taking puberty blocking drugs;
8. the fact that the evidence base for this treatment is as yet highly uncertain.

The Court recognised these are complex matters, and stated, “where the consequences of treatment are profound, the benefits unclear and the long-term consequences to a material degree unknown, it may be that Gillick competence cannot be achieved, however much information and supportive discussion is undertaken.” The answer was not, it said, to give the child more, and more detailed, information. “There is no age appropriate way to explain to many of these children what losing their fertility or full sexual function may mean to them in later years.”

Unsurprisingly, therefore, the Court concluded that it was “highly unlikely” that a child age 13 or under would be competent to consent and “very doubtful” that a 14 or 15 year old could understand and weigh the long-term risks and consequences of taking the drugs. Young people between 16 and 18 are in a separate category – by law they are presumed to have the ability to consent to medical treatment. However, said the Court, given the long-term consequences of this “innovative and experimental” treatment, clinicians may consider it advisable to seek the authorisation of the Court before starting treatment where there is any doubt whether it is in the young person’s best interests.

The Judgment does not mean that puberty blockers cannot be prescribed to children and young people under 18 but it does mean that until the treatment is better established, with a stronger evidence base to support its efficacy, the Courts will supervise its use. 

Comment

On a number of occasions, within its Judgment, the Court expressed its “surprise” at the absence of data necessary to assess the impact and efficacy of the treatment provided. Reading this put me in mind of the recently-published Cumberlege Review, First Do No Harm, into the tragic consequences of three well-intentioned medical interventions. One, the vaginal mesh, was prescribed to women to relieve pelvic organ prolapse and urinary incontinence. It helped many but others suffered decades of excruciating pain and life-changing side-effects. This was due in part to the system “flying blind” – relevant data about the impact treatment was not collated so the experience of this patient group was never systematically analysed and acted upon. Innovation in medicine is good, the Review concluded. The desire to relieve suffering is right. But where the effect of treatment is irreversible and profound, caution is necessary to avoid inadvertently causing harm. As I read it, the Court in Bell v Tavistock were conveying a similar message.

Marina Wheeler QC is a barrister at 1 Crown Office Row.