Thanks, Illinois Freedom of Information Act
Make sure to see my Addendum -- some (not all) of this information was available on a government website, it turned out.
This seems like a growing problem with gender affirming care. Assessing whether an intervention “works” can be thought of in two ways: did removing breasts make the patient feel better because they no longer have breasts, and therefor it “worked”? And then the question of whether the mastectomy worked in terms of reducing gender dysphoria and/or improving general mental health.
So often it seems like these studies say, It worked! But they only assess the first question, and then claim it answers the second question, as if the one obviously follows the other.
But does it?
Anecdotally we hear a lot about an incessant, almost Sisyphean quest to find the next thing that will assuage GD--first the blockers, then the hormones, then a suite of surgeries, always looking for the next one that will make them pass better or maybe make them feel that they are more “truly” the target sex.
I think the difference between question one and question two is profoundly important, and the latter is probably the one that matters the most: if an intervention doesn’t resolve dysphoria and/or improve the mental health of the patient, what’s the point?
You continue to give these researchers the benefit of the doubt. Why? All the obfuscation, misrepresentation & non responsiveness points at this point one way & that way is not in support of the evidence they were sure they would find.
Are we really to believe that if they had better (or any) data showing “affirmative care” be it puberty blockers, opposite sex hormones or surgeries was net beneficial to kids that they wouldn’t be screaming it from the rooftops?
Are we really to believe that “affirmative care” providers just don’t have the data required to answer these questions?
Or are we to surmise that they have a very good idea of what the data will say & would prefer not to think too much about it because it could put their not just livelihoods but that which gives their lives meaning (in their own conceptions) at risk?
I won’t mention the potential impacts on these researchers’, clinicians’ & activists’ future employment prospects & community standing if the data turns out to show “affirmative care” on net 𝘩𝘢𝘳𝘮𝘴 the majority of its recipients.
Every time you discuss how weak and/or misrepresented pro-“affirmative care” studies are you go to pains to stress that “yes, it absolutely helps some people”.
Can you explain in what way the fact that there exist some people for which a poorly at best evidenced medical intervention produces some benefit supports using that intervention indiscriminately in any patient that presents with any of a very broad range of symptoms?
It sounds to me that what you are really saying is that the fact that these studies don’t show that “affirmative care” 𝘩𝘢𝘳𝘮𝘴 patients that the weakly quantified benefits justifies the provision of said care.
If the treatment in question was for Alzheimer’s or terminal cancer I would agree. But that is not what we are talking about. There is nothing 𝘱𝘩𝘺𝘴𝘪𝘤𝘢𝘭𝘭𝘺 wrong with gender dysphoric kids and, as you have related previously, the suicide stats are bullshit.
Even if they were not bullshit, in what other instance is suicidality treated with 𝘱𝘩𝘺𝘴𝘪𝘤𝘢𝘭 interventions (other than physically sequestering a patient somewhere so that they cannot physically harm themselves)?
The onus is 𝘯𝘰𝘵 on providers of a novel treatment to show patients are 𝘯𝘰𝘵 harmed, but to show that the a treatment’s is net beneficial taking into account all associated 𝘳𝘪𝘴𝘬𝘴.
Okay, I'm not giving you legal advice, but just as a point of information, most FOIA processes contain an appeal process to get a 3rd party set of eyes on the request without requiring a lawyer or filing a lawsuit. As a point of interest, Illinois has a public access counselor (https://foiapac.ilag.gov/) who handles such things and may be able to assist you.
This is not legal advice, I am not representing you, or providing legal services to you.
This is permanent surgery removing healthy tissue. Glad the subjects are happy 3 months later. Their breasts are gone forever! How will they feel in 5 or 10 years?
"If researchers aren’t transparent about their methods and won’t answer basic questions about those methods, they are not entitled to our trust."
"Science is Real" was an epic failure of a slogan because it was implicitly "STFU and OBEY". It was not about transparency. It was not about the quest for knowledge. It paid no respect to the limitations of the scientific method to determine "truth".
It was just STFU. It was gross. It was stating that the narrative is reality. It was, by any definition, anti-science.
I’m starting to hold all claims in scientific papers equal to “a raven told me in my dreams.”
This is really bad from an ethical perspective. Investigators have an ethical obligation to publish the evidence that they said they would collect. Withholding data that might change the results means that patients will be making decisions based on incomplete and inaccurate information. If investigators only publish the scales that have a benefit and leave the scales that show no effect or a negative effect in their desk drawer, patients might choose a treatment that is ineffective or dangerous over one that actually works. That puts patients in danger.
This problem isn't confined to gender-affirming care. There's a long-standing problem with oncology trials not reporting all of the secondary endpoints. It's also been a big problem in reporting on psychiatric drugs for children and adolescents. It's socially more acceptable to talk about missing endpoints in oncology trials because oncology isn't politicized the way gender-affirming care is and many of those oncology trials are for expensive drugs made by large pharmaceutical companies while people providing gender affirming care mean well.
One other thing I would point out is that careerism may play a role. Scientists want to publish their work in the highest impact journal they can get. Thanks to politics, journal editors would probably be less likely to publish a paper that found mixed results than one that just reported the positive ones. And the paper might be published with an accompanying editorial that says the study isn't very good. Something similar happened to the DANMASK study. The study was powered to find a 50% reduction in SARS-COV2 infections in people wearing surgical mask and found a 20% reduction that wasn't statistically significant. It took a surprisingly long time to publish it and the journal accompanied it with an editorial that went on about its flaws and could have left the reader with the impression that the study should be ignored -- not a surprise when public health officials were claiming that universal masking could bring the pandemic under control or that masks were more effective than vaccines. Journal editors are subject to the same social pressures as everyone else.
"Wouldn't you want to know if this didn't help the people you care about?"
"Opposing treatment is phobia"
I don't think the activists entertain that they could be wrong, and they seem to be running the institutions (not literally, but sometimes also literally).
I am duly exasperated. Maybe pro bono legal aid will be forthcoming to pursue a lawsuit. To purloin and repurpose the WaPo's slogan, science dies in darkness. It really says something that so many researchers are not close to transparent in their practices. They often treat data and methodologies as proprietary.
Our country is rife with silly liberals running around saying, "trust the science." Well no, don't trust the science until you vet it six ways to breakfast. Regarding gender dysphoria, it is highly lamentable that ideology is trumping careful scientific inquiry wherever you look.
We point out the deep flaws in the UGDS (and the "Dutch Studies" in general) in this article:
Scroll down past "A. High risk of bias in the Dutch research" to "2. Bias in measurement of outcomes: The finding of “resolution of gender dysphoria” is invalid"
Basically, they have a male and female version, and I could administer the UGDS to a dysphoric youngster, then give them a fetching hat, tell them they totally look like the opposite sex now, and administer the opposite sex UGDS resulting in an impressive score improvement! It's bogus.
I'm beginning to think it's all bogus.
Also good to point out explicitly that the gender congruence measure is the only one of those four that doesn't seem like a tautology, hence maybe a not completely useless measure. Of course if you think you shouldn't have breasts and then get a double mastectomy, you'll think your body matches your thoughts of what your body should be!
I feel like science is dying before my eyes (or, at least, the "non-hard" fields). This is all immensely discouraging.
I’m not a scientist though I did train as one. My understanding of scientific paper writing is that one is supposed to include all results and why they do or do not support the hypothesis or talk about why they dropped one of the assessment tools.
ClinicalTrials.gov was intended to address this problem (somewhat) but the public is certainly unaware of it.
As long as the world of medical research is full of perverse incentives, we’re going to be in this mess. It’s not just gender medicine (although certainly this is important and the stakes are high when we talk about sterilizing children). It’s all of medicine.
The three biggest perverse incentives are:
(1) Scientists must “publish or perish.” Things like tenure and grant money ride on this. There is a perverse incentive to find significance in your data so you can publish it.
(2) If something is a potential huge new money maker (such as a new weight loss drug in an era when most Americans are overweight), there is a perverse incentive to find significance in your data (or find that the treatment is effective or doesn’t have bad outcomes or side effects) so that you can make a bunch of money.
(3) If some new “discovery” can create a sexy highly clickable headline, universities / drug companies / media will spin it that way.
In all of these cases (and more) if you have to remove some of the outcome variables to get what you want (statistical significance, tenure, grant money, a profitable new drug or surgery, an attention-grabbing headline) you’ll do it, clinicaltrials.gov be damned.
If you chop off girls’ breasts and they don’t benefit from it, it’s a lose-lose-lose: no one wants to publish negative results; no one profits from NOT chopping off girls’ breasts, and media doesn’t get an exciting headline when chopping off girls’ breasts turns out to be useless.
This last is the most debatable -- but in general, headlines where there’s nothing expensive to sell (like breast-removal surgery) are much less likely to make it into the public eye.
It’s not just “gender medicine” where this happens -- most drugs advertised on your TV are essentially useless -- but it is particularly sad and dangerous when applied to “gender medicine” which is not “life saving” and doesn’t lead to anyone’s happiness or authenticity. (Ask the governments of Finland or Sweden.)
These are extreme cosmetic procedures that also destroy the health of your body in many ways. There’s no win here except for the people selling this stuff.
I get thoroughly irritated by “science deniers” and certainly do not want to join that team. This shit fucks with my head.