[URGENT] UK NHS consultation on puberty blockers
VERY SHORT DEADLINE! (Wednesday 1st November 2023)
The UK's National Health Service (NHS) are about to ban puberty blockers for all trans adolescents, except for a small group who are eligible and willing to be research subjects.
"As part of this NHS England-led process, the National Institute for Health and Care Excellence (NICE) was commissioned to review the published evidence. Overall, there was no statistically significant difference in gender incongruence, mental health, body image and psychosocial functioning in children and adolescents treated with PSH."
-- 6-page introductory PDF to consultation
That's because puberty blockers don't change gender characteristics by definition, you absolute donuts.
They're carrying out a consultation on this because they have to, and there's only two days left. If you are in the UK and you are a young trans person or know any young trans people, please check out this consultation.
Need help answering the questions? Here's a couple of handy links:
Here's a really helpful article about the consultation and some persuasive arguments you could include in your answers, from What The Trans!
Abigail Thorn outlines some excellent points on Trans Writes.
Mermaids, a UK charity supporting trans kids and their families, has a guide for responding to the consultation, too.
Here's the first question, to help you work out if you're in the target group:
In "other", you could put anything like "friend of a trans adolescent", "family member of a trans child", etc. If you're a trans adult who was on blockers or who would have been on blockers if waiting lists had been shorter or family/doctors had been more supportive etc, choose "patient".
Click here to participate.
Deadline: Wednesday 1st November 2023.
2K notes
·
View notes
Palantir’s NHS-stealing Big Lie
I'm on tour with my new, nationally bestselling novel The Bezzle! Catch me in TUCSON (Mar 9-10), then SAN FRANCISCO (Mar 13), Anaheim, and more!
Capitalism's Big Lie in four words: "There is no alternative." Looters use this lie for cover, insisting that they're hard-nosed grownups living in the reality of human nature, incentives, and facts (which don't care about your feelings).
The point of "there is no alternative" is to extinguish the innovative imagination. "There is no alternative" is really "stop trying to think of alternatives, dammit." But there are always alternatives, and the only reason to demand that they be excluded from consideration is that these alternatives are manifestly superior to the looter's supposed inevitability.
Right now, there's an attempt underway to loot the NHS, the UK's single most beloved institution. The NHS has been under sustained assault for decades – budget cuts, overt and stealth privatisation, etc. But one of its crown jewels has been stubbournly resistant to being auctioned off: patient data. Not that HMG hasn't repeatedly tried to flog patient data – it's just that the public won't stand for it:
https://www.theguardian.com/society/2023/nov/21/nhs-data-platform-may-be-undermined-by-lack-of-public-trust-warn-campaigners
Patients – quite reasonably – do not trust the private sector to handle their sensitive medical records.
Now, this presents a real conundrum, because NHS patient data, taken as a whole, holds untold medical insights. The UK is a large and diverse country and those records in aggregate can help researchers understand the efficacy of various medicines and other interventions. Leaving that data inert and unanalysed will cost lives: in the UK, and all over the world.
For years, the stock answer to "how do we do science on NHS records without violating patient privacy?" has been "just anonymise the data." The claim is that if you replace patient names with random numbers, you can release the data to research partners without compromising patient privacy, because no one will be able to turn those numbers back into names.
It would be great if this were true, but it isn't. In theory and in practice, it is surprisingly easy to "re-identify" individuals in anonymous data-sets. To take an obvious example: we know which two dates former PM Tony Blair was given a specific treatment for a cardiac emergency, because this happened while he was in office. We also know Blair's date of birth. Check any trove of NHS data that records a person who matches those three facts and you've found Tony Blair – and all the private data contained alongside those public facts is now in the public domain, forever.
Not everyone has Tony Blair's reidentification hooks, but everyone has data in some kind of database, and those databases are continually being breached, leaked or intentionally released. A breach from a taxi service like Addison-Lee or Uber, or from Transport for London, will reveal the journeys that immediately preceded each prescription at each clinic or hospital in an "anonymous" NHS dataset, which can then be cross-referenced to databases of home addresses and workplaces. In an eyeblink, millions of Britons' records of receiving treatment for STIs or cancer can be connected with named individuals – again, forever.
Re-identification attacks are now considered inevitable; security researchers have made a sport out of seeing how little additional information they need to re-identify individuals in anonymised data-sets. A surprising number of people in any large data-set can be re-identified based on a single characteristic in the data-set.
Given all this, anonymous NHS data releases should have been ruled out years ago. Instead, NHS records are to be handed over to the US military surveillance company Palantir, a notorious human-rights abuser and supplier to the world's most disgusting authoritarian regimes. Palantir – founded by the far-right Trump bagman Peter Thiel – takes its name from the evil wizard Sauron's all-seeing orb in Lord of the Rings ("Sauron, are we the baddies?"):
https://pluralistic.net/2022/10/01/the-palantir-will-see-you-now/#public-private-partnership
The argument for turning over Britons' most sensitive personal data to an offshore war-crimes company is "there is no alternative." The UK needs the medical insights in those NHS records, and this is the only way to get at them.
As with every instance of "there is no alternative," this turns out to be a lie. What's more, the alternative is vastly superior to this chumocratic sell-out, was Made in Britain, and is the envy of medical researchers the world 'round. That alternative is "trusted research environments." In a new article for the Good Law Project, I describe these nigh-miraculous tools for privacy-preserving, best-of-breed medical research:
https://goodlawproject.org/cory-doctorow-health-data-it-isnt-just-palantir-or-bust/
At the outset of the covid pandemic Oxford's Ben Goldacre and his colleagues set out to perform realtime analysis of the data flooding into NHS trusts up and down the country, in order to learn more about this new disease. To do so, they created Opensafely, an open-source database that was tied into each NHS trust's own patient record systems:
https://timharford.com/2022/07/how-to-save-more-lives-and-avoid-a-privacy-apocalypse/
Opensafely has its own database query language, built on SQL, but tailored to medical research. Researchers write programs in this language to extract aggregate data from each NHS trust's servers, posing medical questions of the data without ever directly touching it. These programs are published in advance on a git server, and are preflighted on synthetic NHS data on a test server. Once the program is approved, it is sent to the main Opensafely server, which then farms out parts of the query to each NHS trust, packages up the results, and publishes them to a public repository.
This is better than "the best of both worlds." This public scientific process, with peer review and disclosure built in, allows for frequent, complex analysis of NHS data without giving a single third party access to a a single patient record, ever. Opensafely was wildly successful: in just months, Opensafely collaborators published sixty blockbuster papers in Nature – science that shaped the world's response to the pandemic.
Opensafely was so successful that the Secretary of State for Health and Social Care commissioned a review of the programme with an eye to expanding it to serve as the nation's default way of conducting research on medical data:
https://www.gov.uk/government/publications/better-broader-safer-using-health-data-for-research-and-analysis/better-broader-safer-using-health-data-for-research-and-analysis
This approach is cheaper, safer, and more effective than handing hundreds of millions of pounds to Palantir and hoping they will manage the impossible: anonymising data well enough that it is never re-identified. Trusted Research Environments have been endorsed by national associations of doctors and researchers as the superior alternative to giving the NHS's data to Peter Thiel or any other sharp operator seeking a public contract.
As a lifelong privacy campaigner, I find this approach nothing short of inspiring. I would love for there to be a way for publishers and researchers to glean privacy-preserving insights from public library checkouts (such a system would prove an important counter to Amazon's proprietary god's-eye view of reading habits); or BBC podcasts or streaming video viewership.
You see, there is an alternative. We don't have to choose between science and privacy, or the public interest and private gain. There's always an alternative – if there wasn't, the other side wouldn't have to continuously repeat the lie that no alternative is possible.
Name your price for 18 of my DRM-free ebooks and support the Electronic Frontier Foundation with the Humble Cory Doctorow Bundle.
If you'd like an essay-formatted version of this post to read or share, here's a link to it on pluralistic.net, my surveillance-free, ad-free, tracker-free blog:
https://pluralistic.net/2024/03/08/the-fire-of-orodruin/#are-we-the-baddies
Image:
Gage Skidmore (modified)
https://commons.m.wikimedia.org/wiki/File:Peter_Thiel_(51876933345).jpg
CC BY-SA 2.0
https://creativecommons.org/licenses/by-sa/2.0/deed.en
520 notes
·
View notes
The UK is an absolute cluster fuck at the moment, people are suffering and all our gov wants to do atm is launch a smear campaign against workers and individuals who advocate for them (Mick Lynch) also teach the kids maths.
The audacity of implying that nurses and paramedics are endangering lives when they strike, when the actual endangerment is the calculated destruction of the NHS. The implications that nurses don't work hard enough when they work ridiculously tiring shifts. That if they worked some more they wouldn't need food banks.
That is simply one example of how workers are being mistreated and exploited by this government. And its an important one, we as a country were united by our health service, one we all could be proud of and rally behind.
Our workers desvere so much better, striking is the solution and it's not a decision taken lightly by workers. They need protect.
If you are uk based I'm asking that you sign this petition, demonstrate some solidarity.
3K notes
·
View notes