Puberty blockers: Can a drug trial solve one of medicine's most controversial debates?

[IwantToRetire]

It is among the most delicate and controversial challenges in modern medicine - how to determine whether the benefits of puberty blockers (or drugs that delay puberty) outweigh the potential harms.

This question came to the fore in June 2023 when NHS England proposed that in the future, these drugs would only be prescribed to children questioning their gender as part of clinical research.
Since then, a new government has arrived in Westminster and Health Secretary Wes Streeting has said he is committed to "setting up a clinical trial" to establish the evidence on puberty blockers. The National Institute for Health and Care Research is expected to confirm soon that funding is in place for a trial.

The dilemma that remains is, how will such a trial work?

Eighteen months since the announcement there is still a lack of consensus around how the trial should be conducted. It will also need to be approved by a committee of experts who have to decide, among other things, whether what's being tested might cause undue physical or psychological harm.

But there is a second unanswered question that some, but by no means all, scientists have that is more pressing than the first: is it right to perform this particular trial on children and young people at all?

Article by Deborah Cohen continues at https://www.bbc.co.uk/news/articles/clyd2qe5kkjo

Good. Yes, it's the top story for me now too. When I looked earlier that was a story on Gaza.

Perhaps it was still indexing when I looked, given it's a new story.

I'd like to see them state that these drugs were never approved for this use and that the adult clinics refused to supply their data to Cass.

Seconded, @AlisonDonut and @theilltemperedqueenofspacetime

I think they coached them on having their data blocked due to GDPR. Which is insane unless you know the data will be bad.

@AlisonDonut

Shameless lack of ethics. I don't know why I bother to be shocked any more.

Was that the excuse?

If so that's even more insane when you consider that a GDPR exemption clause called "public task" exists for cases like scientific research.

Here's a thread about BeeWell:

https://www.mumsnet.com/talk/womens_rights/5209872-the-beewell-survey

Apparently it's absolutely fine for them to access the future health and other records of children for the rest of their lives (should BeeWell decide to do this). No need for parents to give permission at all. Because apparently there's no other way of getting a data set to fulfil the needs of the study. That's the criteria for this GDPR exemption.

Yet..... apparently it's totally fine for the NHS to perform experiments on children's brains because it's not possible to use existing data under GDPR laws.

Make it make sense 🤯

If the purpose of this 'treatment' is for these children to 'pass' as members of the opposite sex, that falls into the category of cosmetic surgery. No child should be given harmful medication for this reason.

Yes, this is a very important point that's not made often or clearly enough

How would you measure an outcome? Child A has poor brain development and crumbling bones, but is 2% happier than five years ago?

A really important question.

Well absolutely this is true, Mrs O.

At the same time- I think what Lady's point highlights though, is that even the supposed reasoning for why the 'affirming care' model (ie it's all about being able to 'pass' in adulthood) for children even exists, is flawed. The reason this whole madness I based on.

I never know if I'm using the definition of 'first principles' correctly, but I think this is challenging the approach (medicalisation) from first principles?- Their first principles?

If the whole basis is on the need to 'pass' in adulthood (as justification for the benefits outweighing the risks in puberty blocking) and as Lady rightly points out, this need doesn't actually apply to females (as the largest and increased cohort), then the very basis of that reasoning can be challenged.

There's an article on this very subject in the Telegraph, I don't think it's been posted before

https://archive.ph/9XPIr

https://www.telegraph.co.uk/politics/2024/12/07/nhs-puberty-blocker-trial-activists-cass-review-safeguards/

"The benefits' vs "the potential harms".

So telling.

"The benefits' vs "the potential harms".

What exactly are the benefits?

For males: the ability to 'pass' more successfully in adulthood as a woman (on a superficial first glance, at any rate).

For females: ?????

But even if the ability to 'pass' more successfully as the opposite sex in adulthood is the aim, why is this seen as important? What is the benefit, to the individuals concerned and also to wider society, in people successfully masquerading as the opposite sex?

100% cosmetic surgery

With body dysmorphia issues, surgery is known not to help. Cbt and other therapies are the most effective treatments.

I always assumed that was the plan. Get the activists to justify their case in a context based on science and not emotional blackmail, ie reversing the burden of proof that had held sway for more than a decade.

@nauticant I had hoped but nothing in this horror show has never been as it should be.

I don't think there should be a trial either.

Because a trial is only necessary if you buy into the beliefs of gender ideology, that there are gender identities, that matter more than sex, and can get born in the opposite sex. And the only way to fix this is via hormones and surgery and becoming a life long medical patient with a life long endochrine imbalance.

Some adults may have settled gender incongruence. Some may be able to manage those feelings without physical medical intervention. Some others may decide the best way to manage these feelings is hormones and surgery. This option should always be the last resort and for adults only.

No child should be put on a medical pathway to 'transition'.

Tweet by journalismSEEN

x.com/journalismseen/status/1866073602635809033?s=46&t=A2fpFNgDRyXF2d6ye97wEA

Reminder - you can send the BBC appreciations as well as complaints.

Usually with an appreciation you might not need a response. That means it’s easiest to call in and record a message.

The phone numbers are the bottom of this page.

bbc.co.uk/contact/compla…

I didn't know the bbc had let Cohen go too.

It’s fantastic to see Cohen writing again for the BBC. Her work with Hannah Barnes has had and continues to have lasting global impact. The Cass Review was brought to the US Supreme Court last week. The road to this began with their Newsnight investigations.

Why the BBC let them go baffles belief.

Good thread pulling together her other work

x.com/journalismseen/status/1866031321241256285?s=46&t=A2fpFNgDRyXF2d6ye97wEA

That down-turned mouth reminded me of Donald Trump.

I suppose what I am trying to say is that we don't know enough about gender dysphoria or the best way to manage it to be thinking about a medical pathway for kids. We don't even know if the medical pathway is the right treatment for adults with this condition. We would need a strong body of evidence that medical transition has better long term outcomes for gender dysphoria than alternatives ( such as talking therapies or no intervention). We would need long term studies over a range of health outcomes of those who medically transitioned and those who did not ( of both sexes).
And we would need to know how to ascertain which pre-pubertal kids desisted after puberty and which continued to have gender incongruence.

Puberty blockers are the start of the medical transition pathway. All of above has to be established before looking at puberty blocker trials as puberty blockers only make sense if we already know medical transition is only effective treatment for feelings of gender incongruence, and we know how to accurately diagnose which kids will have settled incongruence for life.

is it right to perform this particular trial on children and young people at all?

Let me think about this for a second.

Hmmm. No.

NOW remind me, who is it who is pushing for this most and remind you of their sex and also remind you of the sex of those children most likely to be caught up in this.

Is it the same sex?

Hmmm.

Excellent idea, thank you.

It'll make a change from complaining.

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Full link for comments.

GDPR is potentially being deliberately misused in this scenario as a blocking tactic.

The Cass Review was brought about by whistleblowing at the Tavistock and concerns about serious ethical and medical misconduct.

The Cass Review has ultimately upheld these concerns and identified areas where serious harm may be being done to children.

GDPR contains the ability to have an exception. I believe there's a few that might apply in this situation.

If there was a situation where serious harm was suspected, then it would fall under a public interest issue on the grounds of health / harm to children.

You CAN make exceptions when the national or public interest is greater than the interests of the individual. Such a case could be in the area of serious harm to children.

I do note the following though re child abuse.

However I do think there is a clause that prevents this if it's felt that information might not be in the best interests of an individual whom that data was about.

So perversely I think that if someone had been abused by having had unnecessary surgery, if it was felt that it wasn't in their individual benefit to release that information or question whether they had been experimented on because the psychological impact on them as an individual would be catastrophic, then you might be able to legally withhold it and then therefore conceal a huge scandal in doing so.

I somewhat suspect if someone had the balls to take it to court, a judge would however probably rule in the public interest because of an ongoing concern.

To clarify what I meant - even someone who has some understanding of the issues uses biased language, presumably subconsciously. Benefits are assumed to exist; harms are somewhat dismissed as "potential", i.e. they may not even exist. Certainly from my parental perspective, benefits are very nebulous and harms seem clear and unavoidable. Harms are absolutely staring us in the face when it comes to surgery, and hard to deny with the disruption of endocrine balance with cross sex hormones. Then there are puberty blockers, disrupting the natural maturation processes.

How it can be a good thing to deny a child puberty during the appropriate age range is completely beyond me. Life can be tough, puberty can be tough, but it's part of the human condition, and avoiding tough experiences that everyone can expect to experience is not a healthy way to navigate life.

Yes, the ‘improvements in mental health’ justification was tagged on later after the Dutch study. But primarily PBs were used to prevent males from developing testosterone-enabled male physical features and thus, theoretically, it was supposed to make it easier for them to pass as women and make them less unhappy as adults.

Is there an ethical issue with doing such a study on children? I think there is - as laid out in the article and by pp. There is a further issue though, even if there were no ethical problems, about how society treats transitioned people.

If single sex sports services and spaces are assumed to be opened up to trans people, then that conversation should be being had in a very public way right now (and should have been had before any of this started). That would mean that, eg, boys who transition understand that that doesn’t necessarily give then access to women’s single-sex provision and vice versa. That really needs to be a proper part of and investigation, because unlike most medical intervention, the impacts are not just felt by the individual.

Edited to add, if the aim of treatment isn’t really the treatment (how the patient sees their own body) but how other people respond to it, then this ‘treatment’ is as much social as medical. This is more problematic, because nobody can guarantee the patients the sort of social reception they will get