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Thanks to you and @Velocio for the info and perspectives on this. It's not something that has been in my circle of experience.
I will keep my thoughts on any rights or wrongs out of this as I'm not sure it would be helpful but I struggle to see how a trial could be run fairly.
From a process viewpoint, it would be interesting to know is how many prepubescent people are currently on these blockers in the uk compared to the number of people in the average mass clinical trial, I would imagine small.
Another problem from a trial pov is how do you find minors to take part in a clinical trial like this where they don't have personal agency to make a decision and those who can get parental permission would they then be willing to be given placebos?
I would expect the NHS or drug companies have data for all sorts of stuff including standardised bone and brain development for the general population so why does a trial have to be double blind if you have baseline data to work from?
Grumpy_Git-
... would they then be willing to be given placebos?
You're talking about a double-blind trial, which is the gold standard, but is obviously not always feasible for medical situations where it's pretty obvious whether the procedure has taken place.
Where a double-blind isn't possible, there are other sort of trial that can also give good results - they just need potentially more care given to the statistical analysis and potential confounding factors.
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It also depends what you're testing and why. Is it efficacy, side effects or treatment paths?
It strikes me as a layman that the test is; a. puperty blockers at <18yo Vs 18yo for young people who choose to transition, b. puperty blockers at <18yo vs no blockers for those who choose not to transition. Rather than any double blind stuff.
But TBH having worked adjacent to clinical trials in a previous life this whole area is frought with technical terms with specific meanings that the media and laypeople are generally totally ill equipped to understand.
Here is a link someone posted to the Yale Law School review that I found interesting and useful
https://law.yale.edu/yls-today/news/report-addresses-key-issues-legal-battles-over-gender-affirming-health-care -
why does a trial have to be double blind if you have baseline data to work from?
Worth stating that Cass says these trials don't need to be double blind. The University of York (rather than Cass) was responsible for saying whether a study was or wasn't included, and they say they included around 60% of the existing papers - though it is fair to say that they only found 2% were of sufficiently high quality. They also say they didn't exclude on the basis of double blinding, which is as we all know not possible when a drug changes something physically obvious:
Blinding is a separate issue. It means that either the patient or the
researcher does not know if the patient is getting an active treatment
or a ‘control’ (which might be another treatment or a placebo).
Patients cannot be blinded as to whether or not they are receiving
puberty blockers or masculinising / feminising hormones, because the
effects would rapidly become obvious. Good RCTs can be conducted
without blinding.The University of York’s systematic review search did not identify any
RCTs, blinded or otherwise, but many other studies were included. Most
of the studies included were called ‘cohort studies’. Well-designed
and executed high quality cohort studies are used in other areas of
medicine, and the bar was not set higher for this review; even so the
quality of the studies was mostly only assessed as moderate.(source: https://cass.independent-review.uk/home/publications/final-report/final-report-faqs/)
useless
hugo7
ReekBlefs
I'm going to try to do something novel in the world of trans rights, I'm going to try to give you a balanced and fair overview of the science and what each 'side' says about it.
Scientifically speaking, puberty blockers are safe as hell. We've used them since the seventies to combat precocious puberty in children, and since the 80s to combat certain midlife conditions, also related to hormone production. They're safe for those use cases.
More recently (since about 1998), they've been used as a sort of delaying tactic for pre-pubescent teens who think they might be trans - they're seen by gender clinicians as being able to buy a teenager some time before they make any decisions about surgery etc. The Cass report said that as this was a novel use for puberty blockers compared to the use cases above, we should do more research, since we don't yet know if there's any irreversible effect of their use on (for example) a teenagers brain or bone development.
Important to note the Cass report did not recommend an outright ban, just more clinical research. But the government has taken this recommendation, and since clinical research happens before a drug is released to the public, that effectively means that people who used to be able to get puberty blockers on the NHS or privately can no longer do so. This is what's being called the 'ban'.
Labour has said they are "minded to renew the emergency banning order with a view to converting it to a permanent ban, subject to appropriate consultation”.That means trans teens will be unable to get these drugs, even privately. Which will mean trans teens going through a puberty they don't want - which must be horrific. And, arguably worse, trans teens for whom these drugs ARE working will have them taken away, and go through a puberty they thought they were saved from.
This is quite a challenging one. I'm very much pro trans rights, but I believe in evidence based medicine. If Cass is right that this is a novel use, and the impact on bone/brain development in teens is not yet understood, then I don't see why they should've been prescribed in the first place. On the other hand, we've been prescribing them since 1998 and isn't that trial enough? Banning them will lead to trans kids killing themselves. Not banning them might mean people who aren't trans being pushed into using puberty blockers without us understanding the impact. What's the right answer?