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Posted by dberhane 2 hours ago

UK Biobank leak: Health details of 500 000 people are offered for sale(www.bmj.com)
149 points | 53 comments
greg_dc 1 hour ago|
In fairness, is this any worse than what Palantir will do with the whole countries NHS records? And they're being paid by the government to do it!
Aurornis 31 minutes ago||
> In fairness, is this any worse than what Palantir will do with the whole countries NHS records?

I don’t get this trend of seeing bad thing happen and then commenting that other bad thing exists and therefore “in fairness” we should downplay it.

Bad things are bad. Comparing them to other things we don’t like doesn’t make them less bad. I don’t like Palantir either but they’re not intentionally leaking health details so this comparison doesn’t even make any sense.

cassianoleal 26 minutes ago||
> they’re not intentionally leaking health details

To many, they are. They're leaking information that has been trusted to the NHS to their own databases.

The fact that it's being done under government contract and (arguably) within the law shouldn't immediately make it any less bad.

estearum 41 minutes ago|||
Is allowing random malicious actors to buy health data worse than allowing NHS's own employees to interact with that data productively?

yes

chromehearts 31 minutes ago|||
Palantir may not be random but it's certainly a malicious actor
philipallstar 27 minutes ago|||
The NHS does it so badly that they brought in Palantir.
estearum 8 minutes ago||
... which provides software to help NHS personnel utilize their own data...
gilrain 33 seconds ago|||
“In fairness, this pot of water was already uncomfortably hot before [latest development] raised the temperature another few degrees closer to boiling.”

…says a happy frog who will be as cooked as everyone else.

jjice 1 hour ago|||
Both are bad
crimsoneer 37 minutes ago|||
Well, one is a thing that has happened, and one is a thing that hasn't happened.
rafram 49 minutes ago|||
Palantir develops database software.
jameshart 2 minutes ago|||
… As part of an explicit, openly stated mission to reshape the global political order.

Palantir is indeed in many ways just a software vendor but we shouldn’t downplay that they have a much more explicit agenda than most other companies do in seeking government contracts.

camochameleon 31 minutes ago|||
“Palantir is here to disrupt and make the institutions we partner with the very best in the world and, when it’s necessary, to scare enemies and on occasion kill them,” Karp said, with a smile on his face. The CEO added that he was very proud of the work his firm is doing and that he felt it was good for America. “I’m very happy to have you along for the journey,” he said. “We are crushing it. We are dedicating our company to the service of the West, and the United States of America, and we’re super-proud of the role we play, especially in places we can’t talk about.” [1]

[1] https://gizmodo.com/palantirs-billionaire-ceo-just-cant-stop...

rafram 28 minutes ago||
Yes, that’s a bunch of bluster about database software.
subscribed 20 minutes ago|||
No, Palantir is not a "database vendor", it's an intelligence company closely working with IOF in their ongoing genocidal efforts and with DHS with mass deportations.

I'd rather see Oracle than a ghoul openly supporting targeting civilians.

londons_explore 1 hour ago||
There isn't much difference between giving this data to 20,000 researchers all over the world and simply publishing the data on the web.

I personally would like data like this to simply be published, together with a law that says using the data to make personalized decisions affecting those individuals is punishable with life in prison.

Basically, this data is 'opensource', but not for use to decide insurance premiums, job offers, or the contents of news articles.

probably_wrong 34 minutes ago||
> There isn't much difference between giving this data to 20,000 researchers all over the world and simply publishing the data on the web.

As a researcher who regularly deals with such data there is a MASSIVE difference. Yes, I have access to the data but I am restricted on how it can be stored (no cloud), what I can and can't do with it, and for some of it I'm even mandated to destroy it once the research project is over. I have the informed consent of every participant, some of which withdrew halfway throughout the collection without any penalty to them. I also don't need a new law because I'm already bound by existing ones, by the contract I signed when I joined, and by the confidentiality agreement I signed when the project started. While I don't know that the leaker(s) will be identified, the existence of the data itself already calls for legal action while giving a starting point for investigation.

Your suggestion, on the other hand, seems to be "let's put this data out there without people's consent and make companies pinky promise that they won't use it in their black boxes in a way that's virtually impossible to detect or prosecute". Those two things are definitely not equivalent.

dweekly 6 minutes ago||
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spacebanana7 1 hour ago|||
> together with a law that says using the data to make personalized decisions affecting those individuals is punishable with life in prison.

This works well in theory but is basically unenforceable. It's barely possible, if possible at all, to audit how FB or google make ad targeting decisions - but once stuff gets into the fragmented ecosystem of data brokers and market intelligence consultancies all hope is lost.

To say nothing of state actors, like countries who might deny you a visa based on adverse medical info or otherwise use your information against you.

Pay08 1 hour ago|||
I can't wait for this to be used for assassination by peanut.
basisword 1 hour ago|||
Which would be fine if that's what the people who gave their data over agreed to.
keybored 1 hour ago|||
“We didn’t make a decision based on that.” Done and dusted?
chii 17 minutes ago||
or it's made the onus for the proof that the data wasn't used, so if your decision didn't come with a proof it wasn't, the party making the decision can be sued for it.

Like a clean room implementation requirement.

estearum 39 minutes ago||
well you just articulated the difference

licensing it to researchers allows you to create, monitor, and enforce policies like the one you describe

stealing it does not

mellosouls 52 minutes ago||
Already being discussed:

UK Biobank health data keeps ending up on GitHub

https://news.ycombinator.com/item?id=47875843

UK Biobank health data listed for sale in China, government confirms

https://news.ycombinator.com/item?id=47874732

azan_ 1 hour ago||
"Access this article for 1 day for: £50 / $60/ €56 (excludes VAT)" Man, the scientific publishing cartel is something else. Note that author will generally get exactly £0 / $0 / €0 for his text.
IChooseY0u 1 hour ago||
[flagged]
tgv 1 hour ago|||
I guess you can't imagine a free, open democratic state with rule of law either. Because when broad, independent, quality journalism with a wide audience is gone, all you'll have to worry about is that poor cat in a tree in Ottawa.
post-it 40 minutes ago||
This free, open democratic state with rule of law funds broad, independent, quality journalism from the public purse: https://www.bbc.com/news/articles/cpvxgl3n138o
speedgoose 1 hour ago||||
I pay for some good quality news and the quality and the lack of native advertising is worth it.
sigmoid10 1 hour ago||
Unfortunately that is almost never enough. If your competition is populist media financed by state-level/billionaire agendas, it is impossible to compete in the long term. We would need a complete and general ban on political financing across all media to sustain such a market.
mentalgear 1 hour ago||||
I paid for TheGuardian because if we don't support truly independent, objective, investigative journalism, who will?

Certainly not Billionaires buying newspapers (e.g. Washington Post/Bezos, ...).

alt227 1 hour ago|||
Then how should the journalists that write about it get paid? I for one would rather pay for news than have to watch ad content for it instead.
clickety_clack 1 hour ago||
It’s not so much about having to watch ads, it’s the incentive alignment towards what’s good for advertisers over what’s good for readers.
WalterGR 2 hours ago||
Related: https://news.ycombinator.com/item?id=47875843 “UK Biobank health data keeps ending up on GitHub”
blitzar 1 hour ago||
Extremely related - my red string on the wall points to this being the source of the data leak rather the latest heist by Oceans Crew.

Given the whack-a-mole takedowns, its pretty clear everyone involved knew what was going on.

mfgadv99 2 hours ago||
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noname120 29 minutes ago||
How can the fulltext be accessed?
jonathanstrange 18 minutes ago|
In the same way as the "UK Biobank" software accesses it.
mentalgear 1 hour ago||
> Data for sale included people’s gender, age, month and year of birth, socioeconomic status, lifestyle habits, mental health, self-reported medical history, cognitive function, and physical measures.

If this is not traceable back to individuals, it would probably good to be made public. But I assume the UK Biobank only gives access to trusted partners since - as we know in our 'data analytics' day and age - with enough general data quantity you can trace back anything to anyone if you have the resources. And the capitalist-surveillance econonmy certainly provides the profit-motive.

fragmede 2 hours ago||
I want to get my DNA digitized so I can do all sorts of health stuff for myself, but finding a place that won't leak my data is troublesome. 23andme is right out.
grey-area 1 hour ago||
Buy a desktop sequencer?

https://nanoporetech.com/products/sequence/minion

fenaer 1 hour ago|||
I have the same sentiment as OP, but for me the main benefit of a company doing it is the analysis that comes with it.
odyssey7 1 hour ago||
If we are censoring our daily activities and major life decisions like healthcare due to the data economy, then it is making us less free. But who knows how many generations will pass before a solution shows up. We would need representatives who act collectively towards motives beyond profits.
ogundipeore 1 hour ago|||
Great suggestion. Thank you for sharing!
GistNoesis 1 hour ago|||
Similar to https://xcancel.com/SethSHowes ~10k budget based on minION sequencer. (Edit : his dedicated project page https://iwantosequencemygenomeathome.com/ )

But once your data has been digitized even if it is under your control the likelihood that it gets leaked is still high. Specially now with AI agents running everywhere, or people just asking AI services for medical advice.

Today the choice for advice is between low quality local AI advice or higher quality advice but lose your data control, the rational choice is probably losing your data control even if if will almost certainly comes back to bite you.

conception 1 hour ago||
https://sequencing.com/our-difference/privacy-forever seems the best choice these days.
sheiyei 1 hour ago||
I can believe the company does their best to keep the records private.

...until they're inevitably sold.

scotty79 1 hour ago||
That kind of data should be public anyways.
alt227 1 hour ago||
Yeah, as long as all 500,000 people in the data set agreed for it to be public then thats fine. But how do we verify that?
Ylpertnodi 44 minutes ago||
They're on the list, their information is out there. Isn't that what 'opt in' means?
PunchTornado 51 minutes ago||
When i signed up as a volunteer they assured me it was not going to be public, only veted researchers allowed to access it.
Aboutplants 1 hour ago|
Gonna wager the US government is the first to purchase
cbg0 1 hour ago||
The US has over 70 million on Medicare, why would they care about 500K brits?
gib444 1 hour ago||
I thought we pay them to have it via Palantir contracts or something?
blitzar 1 hour ago||
I think it is google that we pay to backdoor the data