High court case on puberty blockers and consent

[bumpertobumper]

This week a case starts in the high court with a mother of a teen and a former gids nurse bringing a case that under 18s can't consent to puberty blockers.
Sorry if there is already a thread on this, had a look and couldn't see one.

https://www.theguardian.com/society/2020/jan/05/high-court-to-decide-if-children-can-consent-to-gender-reassignment?CMP=ShareiOSAppp_Other

Michael Biggs’ paper, “The Tavistock’s Experiment with Puberty Blockers” is worth reading for anyone who wants more information on the use of PB at the Tavistock:

users.ox.ac.uk/~sfos0060/Biggs_ExperimentPubertyBlockers.pdf

Agree with what XXstatic says re threshold for consent being low.

We had a situation where a family member with significant learning disability (mental age approx 7 years) was persuaded by a religious group to sign a document refusing a particular medical treatment.

Despite us showing unequivocally that:
a) family member was unable to understand the wording on the form they had signed;
b) family member did not understand the implications of refusing treatment;
c) members of the religious group were demonstrably unable to understand family member's speech and could therefore not be considered to be advocating for them;

the hospital invoked 'consent', accepted the document at face value, and said that family member would not receive the treatment should it become necessary. We lawyered up, but the outcome was the same.

I absolutely accept the need for young people and people with learning disabilities to make choices as far as they are able, but the law as it stands and the general ethos with which the law is being interpreted in clinical settings is hugely weighted in favour of accepting the decisions of the individual, even when those decisions would seem not to meet the threshold of informed consent.

Unfortunately, I would be astounded if this case succeeds unless there is a particular reason why the individual child concerned might have an impaired capacity to consent, such as cognitive impairment.

Is the case only about consent on the part of the child? This is from the crowdfunder page:

We have brought together an expert legal team and we have now written to the Tavistock and Portman NHS Foundation Trust and NHS England to ask them to stop this experimental and potentially harmful treatment.

If it focuses on whether or not it is appropriate to offer this treatment to children, rather than on simply whether a child is capable of consenting to experimental treatment with lifelong consequences, could it still succeed?

Will be interesting to follow.
Children can consent, but as the treatment for gender dysphoria leads to sterility, this is eugenics. Contraception for children is temporary, sterility is permanent. Children are being deceived. Is there any law to stop adults telling lies to children?

Is that part of the actual court case, though OldCrone? I'm only going on what's in the MSM, but The Guardian link quotes the lawyer for Mrs A as saying the case is about consent. They are challenging the whole basis for using Gillick competence in this context:

But Conrathe said the “Gillick competence” test should not apply when it comes to gender reassignment: “The issue is whether the young person is of sufficient maturity and capacity to understand the consequences of their actions. We say it is a leap too far to think that Gillick as a judgment could apply to this type of scenario, where a young person is being offered a treatment with lifelong consequences when they are at a stage of emotional and mental vulnerability. It simply doesn’t compute, and therefore whatever medical professionals say is consent is not valid in law

I think it is possible that the case could be won are regards this individual child, if it is shown that her autism is severe enough to prevent her as an individual from giving informed consent. But I would be very surprised if the high court finds that Gillick does not apply in general to PBs on the basis of the level of understanding needed for consent, for the reasons I gave above: if we don't require much depth of understanding from adults, it would be perverse to require a greater depth from children.

You never know, though - and I would love to be proven wrong

This would suggest it is? assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/317952/Algothrim.pdf

No control arm seems to be necessary

Giving drugs on an experimental basis does not necessarily constitute a clinical trial, Sexequality (again, please don't shoot the messenger..)

The other reason I am pretty sure that the Tavi is not prescribing PBs via a clinical trial (as well as the whistleblowers saying that they aren't) is that, if they were, Mrs A, the mother in the court case, would be able to withhold consent, as her daughter is under 16.

A cynic would wonder if the reason they are not running a clinical trial is that it would involve too much scrutiny: they would need Ethics Committee approval and usually these days, a commitment to publish results even if negative.

It’s not a clinical trial. Read my earlier link to the Michael Biggs’ report- it covers what has been going on in detail.

A bit of his summary attached here.

Is the case only about consent on the part of the child?

I think it is OldCrone. My understanding is they are asking GIDS to stop giving children these drugs because they cannot give informed consent. That's the bit of law they're using to bring the case.

It seems a bit topsy turvy putting all the emphasis on the child and their capacity to consent when of course they should just stop this treatment anyway, whether children can consent or not, because it's so deeply unethical. I can't think how else to challenge it though, except for waiting for those already harmed to take on the burden of legal action as they grow older and experience regret. That option will still be there in the future if this challenge fails.

On the informed consent thing - I understand the threshold for capacity is very low but what about the 'informed' bit? According to the HRA page, GIDS' study stopped recruiting in 2014, so children given blockers now are not part of any study or trial. But GIDS still doesn't have any answers. They don't know why this completely new cohort are flocking to them in such huge numbers and they don't know what the outcomes are - obvs a near 100% progression to cross sex hormones and sterility and loss of sexual function, but in broader mental health terms they don't even know if this treatment improves outcomes for 'genuinely trans' children. Early signs are not promising.

Are the children 'informed' that GIDS are basically winging it? If they are, then is 'we don't know, knobody knows!' sufficient information for anybody of any age, outside of a clinical trial? Especially while bogus suicide stats are being bandied around so freely. Children become convinced that if they don't have this treatment they will be at extremely high risk of suicide. To be clear it's not GIDS plugging the phoney suicide stats but it's worth questioning how much they are doing to counteract that narrative when discussing treatment with these children.

'don't know' vs. made up risk of death

Looks like misinformed consent to me, regardless of the patient's age or capacity. I'm not even a pretend lawyer though, so ...

I don't understand the definition of clinical trial. I thought this was one, it went through two research ethics committees. They stopped recruiting for it in 2014 though so not relevant to children being referred now.

www.hra.nhs.uk/about-us/governance/feedback-raising-concerns/investigation-study-early-pubertal-suppression-carefully-selected-group-adolescents-gender-identity-disorders/

Unfortunately, Pencils the standard for information to be given to patients is also shockingly low. However, a Supreme Court ruling ( Montgomery v Lanarkshire) in 2015 may be helpful in the case against the Tavi. The Court found that, in making a medical decision, the patient should be told about a risk if
“a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it.”

So, if Mrs A can show that the Tavi did not meet this standard, she may succeed. However, what I suspect will be found is that the Tavi did provide information that just about met this standard - even if was in the small print of a patient leaflet. The other problem with a case about PBs is that they don't directly cause infertility or loss of sexual function themselves: they only do so if you stay on them past the age of natural puberty and/or go straight from taking them to taking cross-sex hormones. If you stop them while you are still able to go through puberty, they are of course reversible. So the Tavi may argue that the standard of information required about infertility etc was not that great. (Again, only the messenger here... )

My understanding is they are asking GIDS to stop giving children these drugs because they cannot give informed consent.

This is from the crowdfunder update on 8th November.

It is essential that young people who are experiencing gender dysphoria are given much more thorough assessments, which would allow for in depth psychological exploration and understanding of each child’s particular treatment needs

So I can tell what has happened to date. Our lawyer wrote a formal letter to NHS England and GIDS Tavistock, on 11/10/19 requesting that they should cease prescribing hormone blockers to children under the age of 18 years.

Once the letter had gone to NHS England and GIDS Tavistock, we gave them until 1st November to respond. GIDS have replied and suggested a meeting to discuss the case, which we are currently considering. They have not agreed to stop referring people to the Endocrinology clinic for medication.

It doesn't mention anything about the case resting on the issue of consent, just that these drugs should not be prescribed to anyone under 18.

Also Susan Evans posted this on twitter yesterday:
We hope to obtain a judicial review on the current fast tracking of many children to hormone therapy without adequate clinical assessment and evidence based treatment.
twitter.com/sueevansprotect/status/1213382296633577472

Yeah I'm not having a pop at you. I don't think anybody is?

If you stop them while you are still able to go through puberty

Can you provide some evidence of this for 16/17/18 year olds?

I don't understand the definition of clinical trial. I thought this was one, it went through two research ethics committees. They stopped recruiting for it in 2014 though so not relevant to children being referred now

Sorry, I thought you meant that the child in the current case might have been in a trial. I'm not sure whether the 2011 research project did constitute a clinical trial - I note that GIDS usually refer to it as a research project whereas, if it were a clinical trial, I would expect them to say so, as a trial is more prestigious. But it may have been a trial.

I haven't seen any other bits of law they are using to challenge GIDS though, OldCrone. If they are going to court they have to be specific about how GIDS are behaving unlawfully.

A cynic would wonder if the reason they are not running a clinical trial is that it would involve too much scrutiny: they would need Ethics Committee approval and usually these days, a commitment to publish results even if negative.

They had both (though were turned down by the first research ethics committee and I remember something doubtful - possibly conflict of interest - about the second that approved them). They also had a commitment to publish but haven’t done so.

Can you provide some evidence of this for 16/17/18 year olds?

No because they would tend to be outside the physiological window for puberty by that stage. But there is plenty of evidence from children who were given PBs for their original purpose in children - to suppress precocious puberty - that they are reversible (though not harmless) if stopped early enough. This is how the Tavi has got away with claiming that they are reversible. It's a bit like saying that a car that is speeding towards a cliff edge is reversible: it's true, but it ceases to be relevant once the edge has been passed!

What if the info they are giving patients is actually inaccurate or false?

HRA told them off for describing blockers as a way of providing breathing space, for example.

While looking for more information on the court case I found this quote from the HRA's Investigation into the study 'Early pubertal suppression in a carefully selected group of adolescents with gender identity disorders' on the Transgender Trend site:

It would have reduced confusion if the purpose of the treatment had been described as being offered specifically to children demonstrating a strong and persistent gender identity dysphoria at an early stage in puberty, such that the suppression of puberty would allow subsequent cross-sex hormone treatment without the need to surgically reverse or otherwise mask the unwanted physical effects of puberty in the birth gender. The present study was not designed to investigate the implications on persistence or desistence of offering puberty suppression to a wider range of patients, it was limited to a group that had already demonstrated persistence and were actively requesting puberty blockers.

www.transgendertrend.com/health-research-authority-puberty-blockers-commit-children-permanent-physical-transition/

So the Tavistock has said that these drugs have reversible effects whilst conducting a study/trial in which none of the participants are expected to desist.

What a lot of arrogance. As a trans child I had worked out my gender-identity by around 11 all for myself in the far-away non-Internet 1970’s and if offered puberty blockers would have gratefully and informedly chosen the treatment (with all the attendant risks and uncertainties) over the horror of male puberty. How dare folk contemplate treating equivalent children today with the arrogance those bringing the case propose. Capacity to decide is plainly important. Given that I achieved 13 O-Levels, 5 A levels And 2 S-levels as a teenager and shortly afterwards a first class science degree from the UK’s premier science university (and all ‘before my brain had stopped developing’ as an earlier poster has said), I think I could have fully appreciated the issues. That was, in my case, 40 years ago, so I speak with some perspective. Children, especially teenagers, usually have the capacity for serious decisions. They should be treated with rather more respect that the commentators on this thread (and the relevant legal claimants attempt to) afford them.

The world (or at least this thread) is rather too full of those who believe that they ‘know better’ for others.

Just my view.

What if the info they are giving patients is actually inaccurate or false

That would be very useful, from Mrs A's point of view but, even then, it's not a slam-dunk because the inaccuracy would have to be so substantial as to invalidate consent. And, from what I have seen in the Guardian, I am not sure if Mrs A's lawyers are even going to make an argument about the accuracy of the information. Their case seems to turn on whether Gillick competence is applicable in this situation.

I guess accuracy could come into it, if they argue that it is impossible for accurate data about risks to be given about any such experimental treatment. They might argue that PBs and any other experimental treatment should be treated in law like CTIMPs, with under-16s not allowed to consent. However, the long history of using PBs in children, albeit for a different reason, might make it difficult to argue that they are experimental. Unfortunately we saw with Maya's tribunal that courts struggle to interpret medical information, and the court may not appreciate the enormous difference between PBs for precocious puberty vs PBs for GD.

Xxcstatic
My understanding is the MCA doesn’t apply to children under 16 and it’s this group we’re talking about because as you say, the grey range of 16/17 year olds are generally too far through puberty to be offered these drugs in this manner.
Gillick as has been referred to previously looked at whether doctors can prescribe contraception for under 16s without parental consent or knowledge (and found that they could). While the concept of a child being able to consent to some procedures/treatments has therefore been extended to other areas than contraception and we talk about children being Gillick competent it is still, as far as I am aware, accepted practice that the more serious the intervention or consequences of not intervening are or the younger the age of the child the less likely it is for them to be competent. Therefore a 15 year old can consent to me checking their blood pressure or a blood test but not to having their appendix removed. The surgeons would still be expecting consent for the procedure to be given by the parents.

The case surely hangs on not just the validity of consent in terms of whether a person can give informed consent to something when the potential consequences are either unknown or not imaginable by the person consenting, but also whether the principle of Gillick competency in children under 16 should be considered to extend to consenting to PBs.
I suspect the outcome will be something along the lines of a fudge- I.e it should be on a case by case basis and so in practice little will change because it will come down to the clinician to decide on competency.

I should add here the caveat that it’s some years since I worked in hospital (I’m a GP) so things may have changed in terms of consenting for surgery etc,

If they are going to court they have to be specific about how GIDS are behaving unlawfully.

That makes sense. But if a clinic is prescribing drugs to a vulnerable group of people, which are not recommended by NICE for this purpose, could they be challenged about prescribing them off label if it can be shown that the effects can be harmful?

As a trans child I had worked out my gender-identity by around 11 all for myself in the far-away non-Internet 1970’s and if offered puberty blockers would have gratefully and informedly chosen the treatment (with all the attendant risks and uncertainties) over the horror of male puberty. How dare folk contemplate treating equivalent children today with the arrogance those bringing the case propose.

Without treatment, 80-90% of children who identify as transgender desist after puberty. So for every child like you, there are between 4 and 9 children who would have desisted without treatment, and so far it has not been possible to know which ones will desist and which ones persist. Do you think all these children should be treated even though they will have a better outcome by not being treated?