119 pointsby dberhane2 hours ago9 comments
  • azan_an 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.
    • IChooseY0uan hour ago
      [flagged]
      • tgv38 minutes 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.
      • speedgoosean hour ago
        I pay for some good quality news and the quality and the lack of native advertising is worth it.
        • sigmoid1039 minutes 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.
      • mentalgearan 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, ...).

      • alt227an 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_clackan 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.
  • greg_dcan 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!
    • estearum8 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

    • rafram17 minutes ago
      Palantir develops database software.
    • crimsoneer4 minutes ago
      Well, one is a thing that has happened, and one is a thing that hasn't happened.
    • 30 minutes ago
      undefined
    • jjice33 minutes ago
      Both are bad
  • londons_explorean 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_wrong2 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.

    • spacebanana7an 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.

    • Pay08an hour ago
      I can't wait for this to be used for assassination by peanut.
    • estearum7 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

    • basiswordan hour ago
      Which would be fine if that's what the people who gave their data over agreed to.
    • keyboredan hour ago
      “We didn’t make a decision based on that.” Done and dusted?
  • mellosouls20 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

  • WalterGR2 hours ago
    Related: https://news.ycombinator.com/item?id=47875843 “UK Biobank health data keeps ending up on GitHub”
    • blitzar40 minutes 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.

    • mfgadv992 hours ago
      [dead]
  • mentalgear42 minutes 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.

  • fragmede2 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-areaan hour ago
      • fenaeran 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.
        • odyssey727 minutes 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.
      • ogundipeorean hour ago
        Great suggestion. Thank you for sharing!
    • GistNoesisan 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.

    • conceptionan hour ago
      • sheiyeian hour ago
        I can believe the company does their best to keep the records private.

        ...until they're inevitably sold.

  • scotty79an hour ago
    That kind of data should be public anyways.
    • alt227an 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?
      • Ylpertnodi12 minutes ago
        They're on the list, their information is out there. Isn't that what 'opt in' means?
    • PunchTornado19 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.
  • Aboutplantsan hour ago
    Gonna wager the US government is the first to purchase
    • cbg0an hour ago
      The US has over 70 million on Medicare, why would they care about 500K brits?
    • an hour ago
      undefined
    • gib444an hour ago
      I thought we pay them to have it via Palantir contracts or something?
      • blitzar38 minutes ago
        I think it is google that we pay to backdoor the data