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

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

That was a, if not the, question I always wanted someone to explain.

Just came to post this after spotting it just now during insomniac scrolling.

Cohen asking all the right key questions as usual. Is it right?

Puberty blockers are unethical and any trial would be unethical.

My one criticism is that Natasha Kennedy is not explained.

Their views that kids should be given them, sitting next to the rightly concerned view of the mother from Bayswater who does not, is rather grim when you know the full context.

Interesting that there's no "pro" medical view from any U.K. gp, medical practitioner or clinical group. Kennedy is the only U.K. pro voice.

WPATH are quoted but that a trial is unnecessary.

Both CAN-SG and Bayswater named. No U.K. org of any sort on the "other" side.

Others

Oops,

Otherwise it's an excellent explanation of the issues. Hard to conclude any other way CrocsNotDocs

This Kennedy:

www.dailymail.co.uk/news/article-6145781/University-researcher-asked-Facebook-group-circulate-list-academics-disagreed-her.html

There's also good article by Lucy bannerman for the times but it's paywalled

Gosh looking at those lovely photos of Natacha there's nothing narcissistic looking about them at all.

Gordon Guyatt, a professor at McMaster University in Canada, who points out that randomised trials are done in "life-threatening stuff all the time'

We heard in the USA Supreme court last week that 'gender incongruence' isn't life threatening at all. So that's sorted then. No need for any trial. Thanks Gordon.

Thanks for sharing OP.

Every now and again, the BBC pulls it out of the bag with a great article like this.

One thing I'd like to have seen mentioned is the recent 9 year trial puberty blocker trial in the US:

https://www.nytimes.com/2024/10/23/science/puberty-blockers-olson-kennedy.html

Thinking about this a bit more,
given it's of international interest, could Wes Streeting put pressure on the next US government to force its publication? From a UK perspective, I would like the NHS to have access to the methodology and results of this US trial before deciding whether it's ethical to start our own**. Ideally, the Cass Review would have had access to this US trial. Had it done so, we might not be in the position where we "need" to run one here.

**I can't imagine a situation where it's deemed ethical to run a puberty blocker trial in the UK. Fertility and bone density aside (both of which are red flags anyway), the impact on the developing teenage brain is unknown and highly likely permanent in every case.

Sallie Baxendale's explanation of what we already know about brain development tells us all we need to know about whether preventing puberty completely is ethical:

How on earth could it ever be ethical to run a trial where the outcome would be highly like to be permanent brain damage?

I can't see this making it through ethics

Wouldn't look out of place at Malaga Airport

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.

Do we know who the Chief Investigator will be? Has the protocol been written and reviewed? Has it been through the ethics committee and approved by the regulators?

If none of the above has been done, it will be months before this opens with alot more hurdles ahead

Is this a priming nudge piece ordered by the Gov?

Whilst Debs Cohen has always been excellent on this, it's usually been within Newsnight.

I feel it's significant that she's been given / written this piece rather than any other department. I also feel based on this piece, and who they've interviewed, it leans towards the uk making firm decisions based on ethics; that a trial isn't ethical.

And as a pp says, waiting for more evidence from elsewhere- which won't be great. So an ongoing delay?

I may be reading too much into that, but these are children. The public need to be talking about it.

"Stuff" comment is ridiculous. Children in those situations are usually very likely to die from their condition within a few years or months.

Don't worry Mr Streeting, the trials have already been done - you can easily just follow up on all the kids treated by the Tavistock clinic can't you? Can't you?!

I particularly like the black and white one at the end of the article. It's got that level of class that Waitrose and John Lewis achieved when celebrating inclusion for everyone who might fly through Málaga. Like Ruby, seen here in an official John Lewis publication holding what looks like a great gift for Christmas for anyone so inclined.
#BringYourWholeSelfToWork.

Great points.

I feel it's significant that she's been given / written this piece rather than any other department.

Me too. The Health team has been abysmal on it. I remember a comment from Cath Leng on X where she said that it's important to consider who the editors are in every news team.

To us viewers, the BBC is one entity. Logically Deborah Turness has full oversight over news. But peel back the layers and that's just not true at all. It's a conglomerate of lots of different teams, all working independently of each other. Whilst that should give better impartiality, it obviously has risk. Each editorial chain will decide what's newsworthy and what's not. The Health team has recently written a few things about what's been happening since Cass but it always lacks any curiosity or depth. It comes across as a box ticking exercise, to report a basic level of information but no more. The Identity team continuously overshadows it with all the puff pieces.

This feels like something was done to step aside from the current structure because the current structure wouldn't have surfaced it.

Although it's great that they've done it...... where is it?! I've just had a look on their BBC Indepth website and can't see it on the front page, or in Health. I remember Hannah Barnes saying on Newsnight that her investigations in to the Tavistock were similarly unpromoted. Presumably the silo that is BBC Indepth also has its own editorial control on where it puts articles that are under its brand.

More great points BonfireLady.

For me it's the front page of the app - but iirc I clicked the things I wanted to see and those I didn't a while ago.

However- sometimes a piece like this then leads to more coverage elsewhere?

There bloody well needs to be.

Ultimately the sources on the "pro" side in that piece are not UK based, are not used by NICE, use vague technical terms such as "stuff" and a male primary teacher turned academic (and a few other things by the looks of it.)

There's never any explanation given as to why a treatment designed to make males smaller, weaker and pass as women more easily as adults is being applied to female children.

Any trial with it's head screwed on would need to separate the groups by sex.

Trans men who have been through puberty and then take loads of testosterone pass fairly well, so even proponents of transitioning can't justify giving these drugs to girls - yet we do.

I don't know why Tavistock data isn't included; most of the girls found their mental health worsened.

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.

Its on 'indepth'.

-and its the top (most recent) story on the InDepth front page.

'BBC InDepth is the new home on the website and app for the best analysis and expertise from our top journalists. Under a distinctive new brand, we’ll bring you fresh perspectives that challenge assumptions, and deep reporting on the biggest issues to help you make sense of a complex world. And we’ll be showcasing thought-provoking content from across BBC Sounds and iPlayer too. We’re starting small but thinking big, and we want to know what you think - you can send us your feedback by clicking on the button below.'

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

Yes, this!

The NHS adult gender services holds data that tracks 9,000 young people from the youth service. Some argue that this should be scrutinised before any trial goes ahead as it could provide evidence on, among other things, the potential risks of taking puberty blockers.

Until I saw your post I wondered whether I imagined it, but, I am sure I heard someone from TransActual (?) actually gloating about how they were able to prevent Cass accessing these data, using 'patient confidentiality'. Infuriating.