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

Cross posted with Datun who put it much more succinctly. And reminded us of where this is heading.

And if you can consent to no sex life, why can't you consent to a sex life?

Children in Scotland are able to consent to medical treatment if they understand the implications or having the treatment or not having it.

Obviously this depends on many factors, such as the nature and complexity of the treatment and any risk.

So if a parent consents to a child having a vaccine at school and the child refuses on the day, that refusal is of course valid and the parent is informed. The risks are low because the child can always change their mind and get it later.

Same with something like a filling at the dentist, the consequences of not getting it done are mainly Pain for the child, and they will probably change their mind when this occurs.

It’s hard to see how a child can give informed consent to blockers and hormones when doctors don’t know the lifelong implications, except to say that they are life changing in a serious way.

How can a child who doesn’t know what sex is and has no experience of it, then consent to having no sexual desires in the future, when sex is a vital component of most adult intimate relationships?

How can they consent to treatment that will make their chances of Finding a sexual partner virtually nil, when they don’t understand this ?

I think that’s a false equivalence - getting drunk isn’t a medical intervention, it has no benefit. Could a child consent to, for example, other medical treatment that would leave them sterile? What if the treatment was not life-saving? If so, does that also mean they can consent to sex? (also something that is never in children’s interest, whatever the MAP lot say)

I used a hypothetical as I think in practice, this almost never happens. However, I think we should be cautious arguing children can’t understand or consent to any life altering medical intervention (even against parental wishes) - ref the contraception and catholic mother case. From the mother’s POV that is life altering - essentially encouraging her children to move away from their religion and risk contracting STIs. Yet a court held (rightly IMO) that they had capacity to consent to pill contraception.

There’s also the 80-90% desistance rate. For that to be true there must be 10-20% of children presenting with dysphoria who persist, and if my hypothetical child turned up in that cohort, I think it would be unethical to block an intervention that might help them. I think the probability of that happening are almost 0, though, which is why I oppose giving PBs to children. My point is mainly about an individual patient’s best interest vs population level ‘best practice’ - not that we should be giving out powerful drugs like sweets to kids.

Cross posted with a few as it took me a while to get that in some coherent order.

The point about doctors not being fully aware of the implications is a good one and one I hadn’t considered. In that case, it’s just straight up experimental treatment and should only be used as a last resort.

I think you put it very well, oldcrone.

Like Tammy above, I’ve been on these drugs- I was on decapeptyl, which is the one most commonly used in the Uk for children at the moment.

because I know first hand how serious the side effects, both psychological and physical are, I am fully convinced that these should never be given to children.

I want parents and medics to stop viewing these as benign ways to “pause” puberty, as if it was no more significant than running two pill packs together to avoid a period. These are depot injections of powerful drugs that significantly disrupt all the hormonal pathways that control the most fundamental aspects of our physiology - from appetite to temperature control, to how we feel emotionally - all are disrupted.

We don’t know what effects this has on children whose brains are developing, but the limited evidence is showing that it likely causes a drop in IQ, and that not going through puberty significantly impairs normal neural development. And as a PP has said, it removes the only known significant cure for childhood dysphoria, which is going through puberty!

It’s not a pause, it’s not a time for reflection, it’s an aggressive medical intervention with life long impact. I do not believe 8 year olds can possibly consent to it, and I want their parents to stop being misled as to the gravity of what is proposed.

Really hope this case can crack the brewing scandal wide open. Good luck to all involved, and as always, I’ve got my hand poised above my pocket if funds are needed.

I’ve got my hand poised above my pocket if funds are needed.

If anyone wants to help with this, there is a link on these pages:
twitter.com/sueevansprotect?lang=en
www.transgendertrend.com/

Or just search for " legal case to protect children from experimental treatment".

Got it, thanks.

I think it would be unethical to block an intervention that might help them

To say this we need to define what "help" means. Is kicking the can down the road helpful?

There was a very recent case of a teen aged 14 which ended in complete tragedy and they had been receiving medical intervention.

The statistics that certain people weaponize have never been backed up and someone who was affirmed as per all wishes of so called "experts" well the outcome was the worst possible one. Very tragic.

Surely that in itself means that no child can give any sort of meaningful consent

The trouble is that the threshold for meaningful consent is actually pretty low. You have to understand the consequences of a procedure, and the consequences of not having it, but that understanding only has to be pretty basic. A child who understands that PBs may make them infertile long-term will probably be considered to have met the threshold, even if they cannot possibly understand the full impact of infertility (NB, I wish this were not the case, so please don't shoot the messenger - I am just reporting the reality).

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.

I think that’s a false equivalence - getting drunk isn’t a medical intervention, it has no benefit

Yes, there is that. I guess I'm seeing the word consent here and knowing about all the agendas swirling around makes me very nervous.

The point about it being useful for a certain percentage of kids makes me nervous too.

Because the young women in the Stella O'Malley documentary would, presumably, constitute that group.

But I found them strangely detached. And I'm wondering if the IQ drop, and the lack of the chance of maturity was something to do with it.

20-year-olds readily admitting that they weren't given all the information, but looking at the camera and casually shrugging, was very jarring.

You are not going to get to the point where you are devastatingly missing what you have no conception of, are you?

And they clearly had no conception. They appeared immature. It's the only word to describe it.

And there was that young man, Leo is it, who is now in their late teens, leaping about like a 10-year-old.

It seems an absolutely vital part of the entire issue, to me. What it does to the brain.

You have to understand the consequences of a procedure, and the consequences of not having it,

Well in the absence of any kind of study with which to present to the child, they're not going to know this.

The doctors don't know it. No one know it.

I think it would be unethical to block an intervention that might help them

In what way might it help them?

The main argument for blocking puberty in boys who identify as transgender seems to be in order to prevent the development of a deep voice and the other irreversible effects of male puberty. It is purely so that they superficially 'pass' better as adults. On the limited evidence available about genital surgery on such people once they are old enough, this is made harder, not easier, by the lack of 'material' available for the construction of simulated female genitalia.

It's all about 'passing' - cosmetic changes to appearance.

I've no idea what the arguments are for giving puberty blockers to girls since the 'passing' argument doesn't apply.

A child who understands that PBs may make them infertile long-term will probably be considered to have met the threshold, even if they cannot possibly understand the full impact of infertility

It's not just infertility. It's the ability to enjoy a sexual relationship as an adult. Something which is totally beyond the comprehension of a child.

It's not just infertility. It's the ability to enjoy a sexual relationship as an adult. Something which is totally beyond the comprehension of a child

Yes this.

You have to understand the consequences of a procedure, and the consequences of not having it
Well in the absence of any kind of study with which to present to the child, they're not going to know this
The doctors don't know it. No one know it

I agree, but there are many precedents for accepting consent in similar situations. The same is true of most research projects, for example. This is what I mean by the threshold for informed consent being low.

Please see my comment above about not shooting the messenger. Saying what I think will happen is not saying that I agree with it. I have mainly stopped posting on these threads because people jump down my throat when I state what the law currently says. I notice that not many HCPs or lawyers post much, and I think this is why. But we cannot effectively mount a defence against the use of PBs if we do not face up to the existing law. There is no point just having an echo chamber of people agreeing with each other that the law should be different: we need to appraise the obstacles posed by existing statue and case law, and find ways to challenge them.

Unlike taking the contraceptive pill, children in this scenario have to consent to two different things:

1. To be part of a research experiment. As such they must understand that if is NOT known if the treatment they are being given (PB) is the best option, if it works, and possibly if it is safe: if it was known then it would be unethical to experiment. They must also be be made aware of what data was being collected, how it will be used, what will happen at the end of experiment, what safety protocols (eg for early ending of the experiment) are in place, and consent to these.

2. To have the treatment. They understand what the likely benefits and side effects are, the nature of the known side effects and possible theoretical side effects.

XXcstatic

But we cannot effectively mount a defence against the use of PBs if we do not face up to the existing law.

I do know that. And I do appreciate someone talking about the actual law rather than the ethics.

I guess people are partly just spit-balling here, too. As this is new territory. And I'm aware that what people talk about online, including here, can get picked up elsewhere. And laws change, protocols alter.

We've been caught unawares by people working behind the scenes. And, whether it takes one case or ten, awareness is paramount.

I do understand, and agree Datun. It's just incredibly tedious when posters treat me as if I am advocating for the current law, when all I am doing is stating what it is.

By all means argue with me if you think I am wrong about what the current law says - I"m sure I am at times (I'm a doctor, not a lawyer, though I do a lot of forensic work). But don't get cross with me if I say that the law says X because you think it should say Y. That's all I'm asking, because it is really off-putting to anyone offering an opinion on the law on MN, and I suspect it is deterring posters with far more legal expertise than me from joining this important debate.

And I suppose also what I'm getting at, like the Maya case, is the publicity that a failure generates.

If this case fails, everyone will suddenly know about all the ins and outs of puberty blockers. The drop in IQ, the bone density problems, the lack of research, etc.

The horror that shudders through the country with the knowledge that a nine-year-old can be given them against their parents will, will be enormous.

I agree, but there are many precedents for accepting consent in similar situations.

Given the consequences of this treatment (many of which are unknown, but the ones which we do know are extreme and irreversible), and that this is about medical treatment given to children who do not have a life-threatening condition, can you give any examples of 'similar situations'?

Well, this looks relevant:

The Medicines for Human Use (Clinical Trials) Regulations prohibit children under the age of 16 from giving consent to take part in a Clinical Trial of an Investigational Medicinal Product (CTIMP).

So the question is - are they still providing PB as part of a medical trial? If not, on what basis are they providing them given trial results have not been released?

There are two separate though interlinked issues at play here: informed consent in general and consent by children.

The threshold for informed consent is low. The Mental Capacity Act 2005 says that, for adults, there must be a presumption that they do have the capacity to consent unless there is clear evidence to the contrary. The MCA essentially uses the same tests of capacity as apply to under 16s - that a patient needs to be able to understand & consider the information (and communicate his/her decision). But, because there is a presumption of capacity, the threshold for how deep this understanding must be is necessarily set low. Otherwise, people with low levels of education or intelligence (though still within the normal range) might end up being prevented from making decisions, with paternalistic doctors deciding that they didn't understand the decision to be made in enough depth.

The Gillick competence guidelines, and the Fraser tests (which strictly speaking only apply to sexual health, but which are a good working test of capacity) predate the MCA but are similar to it in how they approach capacity. They are more limited in scope than the MCA, for example, strictly speaking they only give the right to consent to treatment, not to refuse it. However, it seems unlikely that the high court will interpret Gillick competence as needing a higher level of understanding than the MCA does for adults. Otherwise we would be in the odd position of deciding that a 15 year old needs a greater level of understanding in order to give consent than a 17 year old. This is why I think the case will fail. I don't think that the court will be convinced that the 15 year old lacks sufficient understanding, to the standard previously set by other case law for under 16s, or (though only indirectly relevant) to the standard set for adults by the MCA.

The Medicines for Human Use (Clinical Trials) Regulations prohibit children under the age of 16 from giving consent to take part in a Clinical Trial of an Investigational Medicinal Product (CTIMP)

True but only applies to clinical trials and to IMPs. There is no restriction on under 16s consenting to research projects that are not clinical trials (or to trials of products that are not IMPs). The Tavi is not running any clinical trials on PBs AFAIK - indeed, that has been one of the aspects of their care to which whistle-blowers have objected: they are not making any attempt to assess PBs against other treatment pathways.