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UK Biobank leak: Health details of 500k people offered for sale on Alibaba
- WalterGR 5mo agoRelated: https://news.ycombinator.com/item?id=47875843 https://news.ycombinator.com/item?id=47875843 “UK Biobank health data keeps ending up on GitHub”
- fragmede 5mo agoI 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 5mo agoBuy a desktop sequencer? https://nanoporetech.com/products/sequence/minion https://nanoporetech.com/products/sequence/minion
- ogundipeore 5mo agoGreat suggestion. Thank you for sharing!
- fenaer 5mo agoI 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 5mo agoIf 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.
- conception 5mo agohttps://sequencing.com/our-difference/privacy-forever https://sequencing.com/our-difference/privacy-forever seems the best choice these days.
- sheiyei 5mo agoI can believe the company does their best to keep the records private. ...until they're inevitably sold.
- GistNoesis 5mo agoSimilar to https://xcancel.com/SethSHowes https://xcancel.com/SethSHowes ~10k budget based on minION sequencer. (Edit : his dedicated project page https://iwantosequencemygenomeathome.com/ 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.
- londons_explore 5mo agoThere 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.
- Pay08 5mo agoI can't wait for this to be used for assassination by peanut.
- keybored 5mo ago“We didn’t make a decision based on that.” Done and dusted?
- chii 5mo agoor 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.
- basisword 5mo agoWhich would be fine if that's what the people who gave their data over agreed to.
- spacebanana7 5mo 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.
- Aboutplants 5mo agoGonna wager the US government is the first to purchase
- azan_ 5mo 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 5mo ago[flagged]
- alt227 5mo agoThen 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 5mo agoIt’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.
- speedgoose 5mo agoI pay for some good quality news and the quality and the lack of native advertising is worth it.
- sigmoid10 5mo agoUnfortunately 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 5mo agoI 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, ...).
- scotty79 5mo agoThat kind of data should be public anyways.
- alt227 5mo agoYeah, 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 5mo agoThey're on the list, their information is out there. Isn't that what 'opt in' means?
- subscribed 5mo agoThat's a quite.... astonishing* take. If I leak your medical information you confidentially shared it with your doctor that means you are okay with it because you opted in for that? Or does the scope / details do not matter for others, but only matter for your data. *I have much better word but I guess I should say it.
- PunchTornado 5mo agoWhen i signed up as a volunteer they assured me it was not going to be public, only veted researchers allowed to access it.
- subscribed 5mo agoBut it's nonconsensual, contrary to the laws and contract. Should or shouldn't in general, but THIS one database shouldn't.
- greg_dc 5mo agoIn 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!
- jjice 5mo agoBoth are bad
- deleted 5mo ago[deleted]
- rafram 5mo agoPalantir develops database software.
- camochameleon 5mo 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-talking-about-killing-people-2000560597 https://gizmodo.com/palantirs-billionaire-ceo-just-cant-stop...
- rafram 5mo agoYes, that’s a bunch of bluster about database software.
- deleted 5mo ago[deleted]
- subscribed 5mo ago
- mentalgear 5mo 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.
- mellosouls 5mo agoAlready being discussed: UK Biobank health data keeps ending up on GitHub https://news.ycombinator.com/item?id=47875843 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 https://news.ycombinator.com/item?id=47874732
- noname120 5mo agoHow can the fulltext be accessed?
- jonathanstrange 5mo agoIn the same way as the "UK Biobank" software accesses it.
- thom 5mo agoWould this have been prevented by the Trusted Research Environment stuff Ben Goldacre always used to talk about?
- mchusma 5mo agoI honestly think health data should be public by default to any health researcher. We should do whatever we can to solve disease and live forever. Privacy be damned, I want life.
- cs02rm0 5mo agoOne thing that struck me was, when you look through the board and the committees, it's full of scientists, finance people, doctors, academics. There's maybe a couple of technologists - ML, IT delivery. If they've got anyone with a background in cyber security I can't see it. https://www.ukbiobank.ac.uk/about-us/people-and-governance/ https://www.ukbiobank.ac.uk/about-us/people-and-governance/ And then the CEO comes out with: > We have never seen any evidence of any UK Biobank participant being re-identified by others. This data contains sex, at least month and year of birth. I can't see any sensible security-oriented technical person coming out with a line like that.
- Canada 5mo agoThe general public tried over and over and over to reject the collection of such data in the first place. At every opportunity they rejected it. But the people who wanted the data just took it anyway, and when the predictable and predicted bad thing happens, nobody will be punished for it.
- mixxit 5mo agoJust tell me how I check my name