back to article Abuse of health data deserves JAIL, thunders ethics body

Health authorities must consider the moral issues of collecting and linking data in projects such as the controversial scheme, an independent medical ethics body has warned. A report from the Nuffield Council on Bioethics singled out recent health initiatives such as as raising ethical questions surrounding …

  1. Graham Marsden
    Thumb Up

    Good to see...

    ... at least *someone* gets the point that it's not simply about how you can monetise our health information, but how and who should be allowed (or, more importantly, denied) access to the data!

  2. A Ghost
    Big Brother

    I had a true WTF moment this afternoon

    I couldn't move, in some kind of paralysis. I stared at my computer screen as if in one of those 'trances' you get now and again. In this world of daily WTF, I had a WTF moment to surpass them all. Nothing surprises me any more. I know that the few people in power on this planet will stoop to any low. Still, I was not prepared for this:


    In a particularly pernicious move on the part of the government, the law has been changed to allow the Department for Work and Pensions (DWP) to share universal credit claimants’ personal data with social landlords, councils and charities. The information that can be shared includes not only details of benefits, but also of debts, computer literacy and, most alarming of all, medical records.


    So, apart from the BBC being able to legally hire private detectives to follow me around, all because they 'suspect' I might be using a tv without a license, we now get this.

    I'm going to coin a term here. It might upset a few of you. And I've taken time to justify my use of this word to those that have taken me to task for using it, but I'm not sure what good it did. It's a subject I know a bit about. Here goes:

    Information Rape.

    There, I said it. You might not like it. You might disagree with it. You might think I use this term lightly or inconsiderately. But I assure you it is a measured response to how I feel about all of this. There will be a snooper's charter. There will be a ministry of information. And all your data will be shared with whoever the fuck they like, in any kind of authority.

    I'm still in shock to think that my housing association can access something as personal as my medical records. The Cancers, the breakdowns, the suicidal tendencies. I feel violated already. And my housing association is a particularly vindictive, spiteful and petty organisation. I won't bore you with my run ins with them, but rest assured you would not believe it.

    They will also know about my financial information. How far does that go. Do they get a running live update and a log in to my internet banking?

    How do they know my level of computer literacy. What has that got to do with anything. Will I be forced to give email addys? What if I don't agree to this?

    There seems to be so many violating and cruel laws just being introduced with no asking of permission. What if they decided they were going to chop everyone's left arm off and just passed a fucking law to do it? They'd find people to enforce it and most people would just accept it anyway.

    The horror!

    And now I am thinking twice about taking that voluntary job for Age UK. There is an 80 year old chap in this area with no one to talk to, day in day out, spent totally alone and isolated by himself. His wife and life companion recently having died a few years ago. I have volunteered to befriend him. It is taking weeks, in fact months to sort out the red tape I have to go through to get this to work. It's a fucking job in itself. He spent last xmas alone when he could have had a sparkly charming inoffensive chap like me to spend a few hours with. And on top of all the invasive criminal records checks (I understand why this needs to be, I'm not complaining in this instance) now they will have access to my bank account, and my fucking medical records.

    Someone, please downvote me. Call me deranged. Arrange for a medical proffessional to service me as soon as possible. Please tell me I got it wrong, that I'm in some kind of dream.

    Dystopian nightmare indeed. Orwell was a fucking amateur!

    I can't feel the boot yet. But I can see it ranging down, onto my head. Forever.

    Perhaps I don't want people knowing I now have to wear a stoma bag. That I am actually a bi-sexual transexual who is saving up for an operation back to my original state. That I am, in fact, mentally deranged. That I owe £3000 to my drug dealer and am paying him off in weekly installments. No crack for me this week, laddy. Well, no more, anyway.

    I could have posted a rant, but you know...

    1. Anonymous Coward
      Anonymous Coward

      Re: I had a true WTF moment this afternoon

      The Guardian is not the font of all knowledge, in fact it has a very leftist agenda that it follows especially at this time with an election in the wings.

      1. A Ghost

        Re: I had a true WTF moment this afternoon

        I do understand that, but not sure how that is pertinent. Maybe I failed in getting my point across.

        Also. Left/Right. Don't do that any more. That paradigm no longer exists in the 21st Century. People that follow politics and vote use that term. People with agendas too. Not saying you personally have an agenda. Just making a general observation.

        Politics, like reality, exists whether you want it to or not. I try to hide from both as much as possible, but it's a losing game.

        There may be an election coming up for you. And you might think it makes a difference. But in my reality it doesn't. I have no left wing agenda. I think that the Guardian is destroyed now, and its radical feminist agenda and clickbait LCD journalism is a fucking disgrace. A pox on their house I say.

        Still, I just thought I'd link to something that no one knows about and no one is talking about.

        Me. My personal agenda? I just want to live as a free man and have others do so too.

        I'm a mug I know.

        1. Oninoshiko
          Big Brother

          Re: I had a true WTF moment this afternoon

          Well, number 6, you keep trying for that.

          1. A Ghost

            Re: I had a true WTF moment this afternoon

            I'm a number! Not a free man!

            Wait, that's not right either.

            See the level of brainwashing we are subjected to?

            I'll get off my soap box. I just thought that the article in the Guardian was relevant to this discussion. I don't know what is more newsworthy, the actual article, or the lack of response to it. Does no one realise the massive implications of this. This is ripe for personal abuse. And as a victim of petty spiteful powermongers in social housing and the council, I don't think it's a _good_ thing.

            I'm talking drugs, death, underage prostitutes, whistleblowers victimised and made homeless. Stuff that is so deeply shocking on a personal basis. And that was then. This is now. Welcome to the future. I think it might just have arrived.

            This is the point where you expect me to shout (in a Citizen Smith voice) Wake up Sheeple! But I won't do that for obvious reasons.

            Have a good day. A good night. And may your god go with you. (Was that better?)

            1. Jack of Shadows Silver badge

              Re: I had a true WTF moment this afternoon

              If you're looking for a quick meme term, 'data rape' probably gets you farther.

        2. Kane Silver badge
          Thumb Up

          Re: I had a true WTF moment this afternoon

          "Me. My personal agenda? I just want to live as a free man and have others do so too."

          Thank you.

    2. Mark 85 Silver badge

      Re: I had a true WTF moment this afternoon

      Information Rape is a good term. So would be Privacy Mutilation. What you express is all to common: that some will take the smallest bit of information and use it against you. The scariest part of all this is any misinformation that gets into the system, stays there and then spreads. Such as some idiot mistakenly puts someone else's info in your file. Happens all the time with those credit score places and creates years of turmoil.

      1. This post has been deleted by its author

        1. Anonymous Coward
          Anonymous Coward

          But which file did their receipt for her receipt end up in?

  3. James 51 Silver badge

    Add unlimited fines to the companies involved and you might start to get somewhere.

    1. This post has been deleted by its author

  4. Tubz
    Big Brother

    Sensible !

    Somebody with a brain speaking up, shame Government will take no notice once the health and insurance industry starts lobbying and flashing the cash to those in Westminster !

  5. Hargrove

    When it comes to individual rights and freedoms, privacy is the canary in the coal mine.

    The power to gather data for ostensible benefit to the people of a country must be balanced by appropriately severe criminal penalties for misuse of those powers. This should apply to both government and private enterprise. And the term misuse instead of abuse is deliberate.

    I want the government to have access to the data they legitimately need to defend me against terrorism. And I want anyone who uses the data so collected for any other purpose to be fined, jailed and barred from government service in perpetuity. ANY use of data for ANY purposes other than those that have been explicitly stated by the data gatherer should be prohibited by law, and punished. Draconian to be sure. But the pendulum has already swung too far in the wrong direction and is not slowing down. Drastic measures are needed to restore balance.

    1. A Ghost

      Drastic measures are needed to restore balance.

      By drastic, you do mean 'down with that sort of thing', don't you?

      Anything else is pretty much punishable by death these days.

    2. Ledswinger Silver badge

      "I want the government to have access to the data they legitimately need to defend me against terrorism. "

      And what access would that be? They didn't defend anybody on 9/11, 7/7, at the Boston Marathon, at Glasgow Airport, they didn't stop Charlie Hebdo, they didn't protect Lee Rigby, they didn't stop the famed underpant bomber, they didn't stop shootings in Canada, they didn't stop the Madrid bombings etc etc. In the UK, off duty police officers and military personnel (including junior cadet forces) are advised not to wear uniform off duty because our government have evidently already ceded the streets to extremists.

      So how exactly do you think that government will use your or my data to protect everybody from "terrorism"? They seem to think that terrorists send emails saying "Dear Abdul, hope you're well and family are good. Had good time on recent holiday to Syria, Mulla Omar sends his best. Please conduct suicide bomb and gun attack against Downing Street, on Jan 14th 2015, best regards, Abu Hamza."

      I'd accept there's people they do want to track. But they already have all the powers they need by simply making the case to a magistrate. Instead they simply want to have access to everything on everybody because they are lazy and incompetent. The best way government can reduce the risk of terrorism here is to stop the endless dabbling in the politics, feuds and wars of Middle East sh*tholes, not by being able to read my email, and creating an archive in perpetuity of my grumble-browsing.

  6. Christoph Silver badge

    All your medical information will be kept securely.

    And in other news strong encryption will be outlawed, so it will be impossible to keep information secure.

  7. dan1980

    Damn right it does.

    "Abuse of health data deserves JAIL, thunders ethics body."


    Given the recent debates and promises of laws to combat 'revenge porn', I think that proposed laws could well cover this as well.

    Why not? After all, your personal health information is a very private matter (for most people) and release of that is not only a gross breach of trust, it can cause much embarrassment and harm and problems at work and with family should the information get out.

    I see a direct parallel - information/details about you that are very private and not meant for dissemination beyond a very select few is getting abused and distributed outside of that agreed circle without your permission. Sometimes, it seems, for financial gain.

  8. Anonymous Coward
    Anonymous Coward

    Zombie Policy leads to Information Rape...

    Politicians, their advisers are tech companies are playing kindergarten games in a CDC Lab somewhere creating the next virus that will herald the Privacy Apocalypse..

    Why? Because of their naive and corrupt "Look what we can do with the data" attitude, with no forethought to any possible side-affects!

    Along with Information Rape (good term by the way) we need something to describe the plans behind these ludicrous policies.. Information Infection ....Zombie Policies....

  9. This post has been deleted by its author

    1. Ledswinger Silver badge

      Re: Ethics

      "my data would be used for the public good only, and not for private profit."

      How would that happen? Some companies can handle big data to generate insights, but there's no evidence that any private sector body does that. Moreover, in terms of new health treatments, those are almost exclusively privately developed on a commercial basis - if only the NHS and selected university researchers have this data, then there may be some early stage discoveries, but nothing new will come to market.

      What is actually needed is exactly what you say you are opposed to - private access to this data, but it needs to be accompanied by (1) profit sharing with the owners of the data (in the UK, effectively an additional discount to the NHS, perhaps), (2) proper governance and oversight of access and use (which is data protection, not some limp wristed BMA medical ethics oversight), and (3) severe personal and corporate punishments for mis-use or lack of care in handling the data.

  10. Anonymous Coward
    Anonymous Coward

    @ A Ghost

    Have you seen this?

    It's a fairly lengthy piece of investigative journalism published a few days ago, and may help frame the info contained in the Guardian article.

    The topic in the Guardian's is likely part of the same broad effort.

    1. A Ghost

      Re: @ A Ghost

      Ta. I'll check it out.

  11. Anonymous Coward


    What are you going to do about it other than rant then?

    Inform your MP, sign a complaint list,(petition) - there is an election coming after all. .But,if you are not a wealthy Corporation or one of the 1% rich elite (incl the Great & the Good) the chances something might be done in your favour are slim

  12. Just An Engineer

    Privacy appears to be a funny thing.

    Google was required to remove from it searches a public webpage stating a certain person had filed for bankruptcy.

    However it appears that there is litle outcry when your health records are made quasi public, or that housing can be denied based on information supplied by the government, which may or may not be accurate.

    This is really disturbing and you should be more then angry if these are in actuality accurate.

    Privacy is something that is being eroded every day by the governments around the globe and the monied interests where profit and executive compensation is the all important driver.

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