Can children and young people give informed consent to being prescribed puberty blockers after a diagnosis of gender dysphoria? If so, what information do they need to give properly informed consent?
These were the important questions considered in Bell and Ors v Tavistock and Portman, with an interested party (NHS England) and interveners (UCH Trust, Leeds Teaching Hospitals Trust and Transgender Trend). It was heard, unusually for a judicial review, by three Judges including the President of the Queen’s Bench Division and a Lord Justice of Appeal.
The Claimants were a young adult who was prescribed puberty blockers by GIDS, and later cross-sex hormones, and a mother concerned about her daughter potentially being prescribed such drugs.The Defendant is the main clinic for the treatment of gender dysphoria in under 18s, known as “GIDS”. The NHS trusts who intervened are the hospitals which oversee the actual hormonal treatments, when patients are referred to them by GIDS.
What the Court was Not Deciding
This case has nothing to do with abortion in general, abortion for under 16s, or contraception. It has little to do with other forms of informed consent to medical treatment by under 18s, because of the very specific nature of gender dysphoria and its treatment. Gender dysphoria is a condition without physical manifestations, but treatment with puberty blockers causes physical changes that can be life-long and life-changing.
The court was not deciding whether puberty blockers for under 18s were a Good Thing or a Bad Thing. It was deciding whether GIDS’ own policy was lawful in light of the information and data available to GIDS.
Factual Findings Made and Facts Considered
The court considered witness evidence from many different people, including medical experts from GIDS, trans people under 18, and trans people over 18 who had previously been treated at GIDS.
In terms of GIDS’ own data and records, the court was clearly concerned that little systematic data was being recorded, considered and taken into account. For example, from 2011 to 2019, GIDS had no details of the ages of children and young people prescribed puberty blockers. It did not record co-existing conditions such as autism. It did not have data about the numbers of patients treated with puberty blockers who then went on to be prescribed cross-sex hormones or undergo surgery for dysphoria.
The court said more than once it was “surprised” that the Defendant did not collect this information. Surprising the High Court is not, in this context, a positive thing.
The court considered that the Defendant’s data and research did not distinguish between puberty blockers prescribed to younger children who were undergoing premature puberty, and puberty blockers prescribed for gender dysphoria to children and young people going through puberty at a normal age. The premature puberty use was the source of almost all the data in relation to puberty blockers.
On the Defendant’s own evidence, there was a paucity of data about the effects, benefits and disadvantages of treating gender dysphoria by puberty blockers. The UCL study which started in 2011 has still not published full peer-reviewed results. The court asked for such results, but did not receive them.There are not, apparently, any other comprehensive studies into such treatment. The interim paper produced by Dr. Carmichael, head of GIDS, “noted that there was no overall improvement in mood or psychological wellbeing using standardized psychological measures.”
For all these reasons, the court considered that the prescription of puberty blockers to those of a standard age for puberty as treatment for gender dysphoria was experimental.
The court also considered that the evidence, while not complete, indicated that a very large percentage of children and young people prescribed puberty blockers went on to take cross-sex hormones later. So a child’s consent to take puberty blockers could not be informed consent without an understanding of the overwhelming likelihood that it would lead to taking cross-sex hormones afterwards, and an understanding of the consequences of that decision.
The court considered, on the basis of the Defendant’s own evidence, that taking puberty blockers could not be said to be entirely reversible or without consequences. There was insufficient evidence about the consequences of long-term suppression of puberty, but there were possible risks for physical development (bone density, growth, height) and the psychological development which occurs during puberty. Data from children prescribed puberty blockers to prevent premature puberty did not assist in analysing this, because those children went through puberty at roughly the same time as their peers.
So a child or young person giving informed consent to taking puberty blockers had to understand and weigh the information about the likelihood of loss of fertility, loss of sexual function and enjoyment, and associated consequences as well as the risks to physical and psychological development.
Lastly, the court found there was a lack of clarity and consistency about the aim of treatment with puberty blockers, and how success could be assessed. There were references to a “pause”, or a time in which a child could think further and explore sex and gender identity. There were references to preventing distress and gender dysphoria caused by going through puberty in the child’s birth sex. There were also suggestions that it would be easier for a child or young person to transition through surgery after adulthood if puberty had not occurred.
If you don’t know what the aim of a treatment is, and don’t clearly have that aim in mind, it is hard to see how the success of a treatment can be assessed.
The Court’s Conclusions
The court decided that it was most unlikely that a child of 13 or under could understand, take in, and properly weigh the information about the effects and consequences of taking puberty blockers, including the likelihood of proceeding to cross-sex hormones. It was difficult to see how a child of that age could properly consider the issues of fertility, sexual function and pleasure, and life-long consequences.
The court’s conclusion was, therefore, that it was going to be very rare that a child was capable of giving informed consent to puberty blockers aged 13 or under.
The court concluded that 14 and 15 year olds were more mature, older, and it was possible that some under 16s would be capable of giving informed consent to treatment with blockers, but the court was “very doubtful” that many 14 and 15 year olds would be able to give such consent.
The legal position for 16 and 17 year olds in relation to medical treatment is different; there is a presumption of capacity. The court sounded a note of caution, however, stating that clinicians “may well consider that it is not appropriate to move to treatment, such as PBs or CSH, without the involvement of the court”: in other words, they may need to apply to the court to make a determination on a young person’s best interests. It is a warning to doctors prescribing such drugs that they must take great care.
GIDS and the Trusts were not criticised for the information they gave. The Court accepted that the written information to children, young people and parents tried hard to give full information that explained the potential consequences. The problem is not the information given but the ability of children and young people to understand and weigh it up.