back to article 'UK DNA database by stealth' proposed in £100m NHS project

Prime Minister David Cameron is to announce plans for the NHS to create a massive database of patients' DNA, which experts have advised could lead to massive health benefits and advances in medical technology. However the creation of such a database has obvious and far reaching privacy implications. In an attempt to address …

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  1. TRT Silver badge
    Holmes

    Curious...

    I wonder how many human chimera there are?

    1. John Smith 19 Gold badge
      Boffin

      Re: Curious...

      "I wonder how many human chimera there are?"

      At least some of the genes defining the wall of the human womb are the same as those of certain diseases.

      The diseases pre-date humans by millions of years.

      The answered would be everyone

      1. TRT Silver badge

        Re: Curious...

        @John Smith 19,

        Do you know what a chimera is?

        1. Anonymous Coward
          Anonymous Coward

          Re: Curious...

          Course we do!

          It was that thing Dick Van Dyke sung about in Mary Poppins.

        2. John Smith 19 Gold badge
          Happy

          Re: Curious...

          "Do you know what a chimera is?"

          Well I'm familiar with the usual English language description.

          The genetic description of the term is different. However using that one then the fact that all humans carry Mitochondria, which have a separate DNA inheritance means and DNA transfer mechanism (only through the female line) means that yes we are all chimera by the genetic definition, not the common English usage.

          Now I wonder who else voted me down and if they understood the difference or played follow the leader?

          1. Anonymous Coward
            Anonymous Coward

            Re: chimeras

            That might be one of the meanings of the term, but I think what we're interested in here is: http://en.wikipedia.org/wiki/Chimera_%28genetics%29#Human_chimeras

            I followed the links and found a reference to something like a few percent of twins, and presumably a tiny proportion of non-twins. Of course, identical twins represent another (the opposite) problem for identifying people by their DNA.

          2. TRT Silver badge
            Headmaster

            Re: Curious...

            Well if all organisms are chimeras under your understanding of the term, then it's not a very useful term, is it?

            Of the various biological usages of the term 'chimera', one refers to animals where tissue i.e. cells, have different genetic origins. This can occur as a result of the fusion of two zygotes to form a single embryo, or the fusion of two embryos at a fairly early stage of differentiation, or fusion of a zygote with an embryo. It can also occur in a parasitic form in adults, as in the case of the angler fish.

            The other use is one where DNA from two organisms has been spliced together.

            The relevance to this article is that a DNA sequence obtained from, say, a cheek swab could be completely different to a DNA sequence obtained from a blood sample from the same individual, which could be different again to the sequence passed on to a child, or obtainable from a sperm sample. It's rare, but until fairly recently there was no idea that this happened, and as yet there are no accepted statistics to show the frequency of this state in the population as a whole. The issue has cropped up in various criminal and civil cases that have passed through the courts.

    2. LarsG
      Meh

      For the first few years all will be well. New Government new legislation introduced, DNA data base given to private firm for storage. Police demand access to data base as a matter of course. Data no longer anonymised 'for the general good'. Private firm enters agreement with Government agencies to share data with all agencies including local authorities. New legislation introduced to sell data to any firm that lodges a request to see it.

      IF YOU HAVE NOTHING TO HIDE?

  2. auburnman
    Alert

    Health insurance

    They're currently allowed to set premiums based on your medical history, aren't they? What happens when your records show you have genes associated with a higher risk of cancer/stroke/diabetes/whatever? Will you have the right to withhold that information?

    1. Anonymous Coward
      Anonymous Coward

      Re: Health insurance

      Withhold that info = high premium?

      1. TRT Silver badge

        Re: Health insurance

        Meh. If they can't set the insurance premiums for females differently to males... and most males are missing a huge chunk of DNA making them more prone to genetic disease anyway...

        1. Jonathan Richards 1
          Boffin

          Missing DNA

          > most males are missing a huge chunk of DNA making them more prone to genetic disease anyway...

          Erm... no, I don't think so. A male inherits one X chromosome from his mother and a (smaller) Y chromosome from his father. If anything, it's females who are missing a chunk of DNA, since they miss out on Dad's Y chromosome, and get an X from their paternal grandmother.

          The gender-related gene complexes for female characteristics may not be *expressed* in the male phenotype, but they're still there, otherwise males wouldn't be able to father daughters.

          1. MondoMan
            FAIL

            Re: Missing DNA

            Poster TRT above was in fact correct in his/her statement that:

            > most males are missing a huge chunk of DNA making them more prone to genetic disease anyway...

            Even though we inherit two copies of almost every gene (one from father and one from mother, except in specialized cases), almost always a single properly-functioning copy is enough for normal development and life. Thus, even if one of your gene copies is defective, the other copy is likely OK and acts as a backup, providing enough normal function to avoid having fly antennae (or other movie-style "mutations").

            The X and Y chromosomes are one of the special cases, with females having the usual two copies of the chromosome, one from father and one from mother (X and X), but males having only one copy of the X and in place of the other copy a smaller chromosome called Y. Although Y does contain some dozens of male-specific genes, it is missing something like 90% of the genes on the X (many, many more than the few male-specific genes gained on the Y). Thus, for the hundreds of genes on the bulk of the X chromosome without corresponding "backup" copies on the Y, any gene defect will become evident, rather than being masked by the proper function of a "backup" copy. Classic not-extremely-fatal examples of this include the famous hemophilia gene passed to many of Queen Victoria's descendents, and most color blindness. Fatal examples include X-linked SCID, a severe immunodeficiency caused by a single defective gene for an immune-system receptor building block.

            Bottom line: human males are missing "backup" copies of about 3.4% of their genes because of having only a single X chromosome instead of the two copies that females have. This is likely to be the underlying reason that human males have average lifespans about 10% shorter than human females, once death due to pregnancy/childbirth complications is prevented.

            1. Anonymous Coward
              Anonymous Coward

              Re: Missing DNA

              Which is why they should give up their seat for us, open doors for us, and be the ones who get out of bed in the morning to make us a cup of tea.

              anon for obvious reasons - who knows the awsome web tracking power of the X chromosone.....

              1. Anonymous Coward
                Anonymous Coward

                Re: Missing DNA

                Which is why they should give up their seat for us, open doors for us, and be the ones who get out of bed in the morning to make us a cup of tea.

                But what if accepting those benefits required you to lose your ability to read a map, find that beer didn't taste good, and resulted in you losing 50% of your common sense, and 100% of your empathy for mechanical things?

                1. TRT Silver badge
                  Paris Hilton

                  Re: But what if accepting those benefits required you to lose your ability...

                  Well, it depends on the relative importance you place on those skills. Of course, at critical moments, the ability to read a map or diagnose an engine's ignition failure may fail in males as well, so the relative importance of these skills will suddenly increase for your female companion who is stranded by the side of the A1M in the depths of the border regions. Coupled with the male's virtually immovable reluctance to ask a passer-by for directions or phone a garage doesn't help - at which point said female companion will berate you loudly and constantly for such failings, as I know from personal experience. It's the social equivalent of being beaten about the head with your own penis. Such an event, were it possible practically as well as figuratively of course, and without detachment / dismemberment, would probably make up for the deficiency in map reading, mechanics, and probably just about anything else.

            2. Dick Emery

              Re: Missing DNA

              Ah! So that's why the condition I have is X linked ichthiosis. The more you know.

    2. Annihilator
      Meh

      Re: Health insurance

      I think that's the grim reality hidden beneath this message:

      Now that costs have supposedly plummeted, the market is ripe to be exploited by private companies hoping to cash in by using these rich datasets to create "personalised medicines and individualised treatments".

    3. mhoulden

      Re: Health insurance

      Sounds like an excellent reason to make sure the NHS continues then. Just because private health companies want cash doesn't necessarily mean it's a good idea for them to have it.

  3. That Steve Guy
    Big Brother

    Databases

    Between internet comms, this and everything else, What is it with UK Governments trying to profile citizens?

    1. Mike 140
      Holmes

      Re: Databases

      It's in their genes.

    2. Alan Firminger

      Re: Databases

      Because they can.

    3. John Smith 19 Gold badge
      Unhappy

      Re: Databases

      Look up "Sir Humphrey Appleby" and "Thomas Brian Reynolds"

      That should tell you everything you need to know.

    4. James 36
      Black Helicopters

      Re: Databases

      aren't these all Nu Labor policies dusted off ?

      I thought they were suppsoed to wait fior the 2nd term before rehashing the previous governments policy ideas

      anyhoo, scope creep on a DNa database is just scary,

      maybe I have seen too many sci-fi films !

  4. The Alpha Klutz

    "A number of ways to store this data will be investigated,"

    yeah, so far they've looked into USB sticks and portable hard drives. Some scenarios to test the devices include: how long will they go unnoticed on a train seat, how many will fit into the bin at the local park, etc

  5. Forget It
    Black Helicopters

    I wonder how useful this database might be to our enemy in the next world war?

    1. Anonymous Coward
      Unhappy

      "I wonder how useful this database might be to our enemy in the next world war?"

      None at all. Most government projects cost us peasants money, make our lives irritating in a myriad of new but tiny ways, but fail spectacularly to do what they say they will. On that basis a part-functioning DNA database would be of limited use.

      No, the most useful thing to our enemies is the British government and their civil service.

  6. Voland's right hand Silver badge
    Devil

    GATTACA

    Quote: I belonged to a new underclass, no longer determined by social status or the color of your skin. No, we now have discrimination down to a science.

    Welcome to the new tomorrow...

    1. OrsonX

      Re: GATTACA

      ha, you beat me to it!

      it would be funny if it wasn't true

  7. LesC
    FAIL

    Of course the DNA database is anonymous, we all believe what HMG says is above reproach. Until it's monetised and flogged off to the highest bidders by some cash strapped government... leaving poor Joe Publick mystified why he can't get life insurance or anything else as he / she's got the p53 or BRCA1 gene...

    Didn't the BBC touch on this a few years ago with a series the name of which escapes me?

  8. Anonymous Coward
    Anonymous Coward

    Anonymous

    Anonymous with no way of identifying the individual, except surely DNA itself is a whacking great form of ID?

    Though tying up with the individual can't occur until someone takes their DNA to match the database (hmm, Police perhaps).

    What they can do aside from medical treatments on individuals, which would have to link your ID, is profile the country and wouln't be hard I guess to work out what DNA is linked to what other DNA, i.e. families. Could be possible to infer a lot from that.

    I'm all for the medical benefits though, but suspect that the gov would throw £100m at this as I doubt they'd normally be keen to throw that at the NHS.

    Anonymous, because.

    1. John Sager
      Thumb Down

      Re: Anonymous

      Too true. It ain't. A DNA database is a damn great directed graph (acyclic? - probably not) with the cross-matches as the links. So given enough identification within the database, any other entry can be identified by the relationships. The police already do this in their own DNA database to identify relatives of existing entrants.

  9. OrsonX
    Big Brother

    GATACA

    why not just sequence everybody at birth and get rid of people with an IQ of <100 and any genetic defect?

    1. TRT Silver badge

      Re: GATACA

      Because IQ and DNA sequencing are only loosely correlated at best?

      Because we all carry on average four genetic defects?

      Because genetic anomalies are a key part of evolution by natural selection?

      And besides, we can't jettison the dumb-asses of our society, because we need a constant supply of commentard-fodder.

      1. Anonymous Coward
        Anonymous Coward

        Re: GATACA

        "Because we all carry on average four genetic defects?"

        But we don't all carry the average number of defects. There are those of us with none.

        1. TRT Silver badge
          Headmaster

          Re: GATACA

          Sorry, got it slightly wrong. The actual quote is "It revealed that a normal healthy person has on average about 400 potentially damaging DNA variations, and two DNA changes known to be associated with disease."

          This is the BBC News article from three days ago. Their headline: "We all have hundreds of DNA flaws, UK geneticists say"

          1. OrsonX

            "400 potentially damaging DNA variations"

            OK

            First thing to do on Monday, fix the inherent flaws.

            Tuesday, give myself super-genes.

            1. TRT Silver badge

              Re: "Tuesday, give myself super-genes."

              I saw some lovely ones in Top Man the other day.

            2. John Smith 19 Gold badge
              Meh

              Re: "400 potentially damaging DNA variations"

              "First thing to do on Monday, fix the inherent flaws."

              Actually even that question is a bit trickier to answer than you seem to think.

              Look up "Sickle cell trait"

              Is it an illness or a super gene?

              It makes for entertaining conversations with black Evangelical Christians who have it as well.

        2. MondoMan
          Boffin

          Re: GATACA

          IIRC, DNA mutations are not independent events, so it's quite unlikely that there are those of us with none.

      2. OrsonX

        "genetic anomalies are a key part of evolution by natural selection?"

        Humans are now devolving as everybody who should have died at birth are now being kept alive and breeding.

        The only way humans are going to improve (smarter/ fitter / more longevity, etc.) is through genetic engineering. What would really help is a huge database identifying all the thick / ill people, the first thing to do (at the most simplistic level) would be to eradicate these genes from our progeny.

        If only we had such a data-base? If only we could target and modify any gene?

        Oh, wait....

        1. Magister
          Big Brother

          Re: "genetic anomalies are a key part of evolution by natural selection?"

          >>What would really help is a huge database identifying all the thick / ill people, the first thing to do (at the most simplistic level) would be to eradicate these genes from our progeny. <<

          A certain leader in the last century (Hr. A. Hitler) had exactly this idea. http://en.wikipedia.org/wiki/Lebensborn

          Similar plans were proposed at a number of different Eugenics conferences during the early 20th century; what's interesting is that this is now banned under the Charter of Fundamental Rights of the European Union. I wonder if their database (sorry, "data infrastructure") could also be construed to be a breach of this?

        2. Anonymous Coward
          Anonymous Coward

          "would really help is a huge database identifying all the thick / ill people"

          They have, it's called the Essex Electoral Register

        3. John Smith 19 Gold badge
          Meh

          Re: "genetic anomalies are a key part of evolution by natural selection?"

          "What would really help is a huge database identifying all the thick / ill people"

          People who I suppose you could deem to "live lives less worth living."

          Perhaps you should look up the phrase "T4 programme."

        4. MondoMan
          Pint

          Re: "genetic anomalies are a key part of evolution by natural selection?"

          Dude, Devo was an excellent band, not a serious scientific proposal...

          They do get 21stC "sustainability" props for their re-use of flower pots!

      3. JohnMurray

        Re: GATACA

        Is there a gene that encodes for a person to become a politician ?

        If so we seriously need to find a way to zap all those born with that defect.

      4. MondoMan
        Meh

        Re: Re: GATACA

        TRT is right that DNA sequencing and IQ are only loosely correlated (you can get just about anyone to run a DNA sequencing machine these days :) ), but the actual DNA sequence would be well-correlated with IQ, if only we knew which parts (genes) to look at. Twin studies, where IQ was tested for identical twins (genetically identical) and fraternal twins (only genetically as related as siblings), have been run and indicate that about half the variation in IQ is due to genes, leaving about half for environment.

      5. Vic

        Re: GATACA

        > Because IQ and DNA sequencing are only loosely correlated at best?

        You've not seen the film then?

        You should. I rather enjoyed it.

        Vic.

    2. DragonLord
      Headmaster

      Re: GATACA

      GATTaCA

    3. Captain Hogwash Silver badge
      Facepalm

      Re: GATACA

      Because the meaning of 100 IQ would change over time as you got rid of the 'defectives' to include 'acceptables' for termination.

      1. OrsonX
        Go

        "100 IQ would change over time"

        TRUE

        But this would just mean that we get smarter faster.

        1. Circadian
          FAIL

          Re: "100 IQ would change over time"

          @OrsonX

          nice of you to volunteer to be "data-cleansed". You seem to think that you would make the cut, but from the very shaky knowledge you have about genetics and how IQ works, I have serious doubts on that front.

      2. Nick 6
        Trollface

        Re: GATACA

        Sounds like appraisal time around here....

    4. Anonymous Coward
      Anonymous Coward

      Re: GATACA

      IQ is an indicator of how well educated you are or how good your conventional skills like maths and language are. It is not an indicator of intelligence as skills can be improved but often someone's comprehension can't.

      Was Einstein a genius at birth or did he improve his knowledge and skills over time?

      1. AgeingBabyBoomer

        Re: GATACA

        IQ is an indicator of being good at IQ tests.

      2. MondoMan
        Meh

        Re: GATACA

        While that's the politically correct line these days, it's not actually true. Check out the original IQ work, especially in the 1960s-80s.

        Re: Einstein -- both.

    5. Anonymous Coward
      FAIL

      Re: GATACA

      why not just sequence everybody at birth and get rid of people with an IQ of <100 and any genetic defect?

      Where would we get fresh politicians from?

    6. veganhead

      Re: GATACA

      And have Apple lose most of it's fanboi customer base?

      Oh hang on a minute ...

    7. This post has been deleted by its author

      1. OrsonX

        @Symon

        I wish I could improve your IQ so that your read earlier post before spamming.

      2. P. Lee Silver badge
        Paris Hilton

        Re: GATACA

        > Eventually, there will be only one person left. The cleverest one.

        And he'll still have an IQ of 100 and be very average.

      3. Vic

        Re: GATACA

        > Eventually, there will be only one person left. The cleverest one.

        ... With an IQ of 100...

        Vic.

    8. Anonymous Coward
      Anonymous Coward

      Re: GATACA

      "why not just sequence everybody at birth and get rid of people with an IQ of <100 and any genetic defect?"

      What are you trying to achieve? Colonisation of space?

      We have a perfectly good planet here, but is dragged down by greed and lack of empathy. So, if you wanted a better quality of life, then surely it shouldn't be based on IQ, but based on levels of greed and empathy. But of course, that in itself is paradoxical, as those with high levels of empathy and low levels of greed wouldn't be willing to "cull" other humans for their own gain.

  10. Anonymous Coward
    Anonymous Coward

    I say let's trust them! After all, don't they have our best interests at hear? And what's the worst that could happen?

    (Not really anonymous as my DNA is attached to this message.)

    1. The obvious
      Coffee/keyboard

      Friend, You owe me a new keyboard. This one has coffee (mixed with DNA) all over it.

  11. Anonymous Coward
    Anonymous Coward

    Ignorance is bliss

    Going by the current goverbent's ability to stick to the data protection act, the only way they are getting mine is by force.

    What they have that planned already, well move me to an island and call me something different.

  12. ElsieEffsee

    As in Space Balls

    its all about the merchandising!

    Create a database of everyone DNA and then sell this to insurance companies who will ramp up the cost of policies to anyone with an 'undesirable' genetic trait. They could also use it to deny a payout after years of paying premiums.

    Its not like they insurance industry and Government don't have a track record on this. Many young drivers can't get car insurance now without having a spy in the car reporting their location, time, speed etc for (so we are told) safety. Yet the real reason is the more that have this the easier it will be to introduce road pricing and bill drivers for their time in a car.

    DNA database, car tracking and peoples blind acceptable of Facebook, Amazon and Google tracking / profiling is leading our society into something worse than Orwell dared imagine.

    Wherever a govt or company says a new system or procedure is for the benefit and safety if the public, you have to look at the bigger picture and realise how much money those in power can make.

  13. DragonLord

    Simples

    Database A - Public(ish) access 3 fields/tables - DNA Hash, DNA, medical condition that caused deposit.

    Database B - Private(ish) access - Rest of patient details + DNA hash

    At this point as long as database B remains secure (it could be card files :P)) the contents of database A can't be used for any sort of geographical profiling or linked to a person. Equally the only way you'd end up on the database is if you had a medical condition that they were researching.

    And using a hash rather than a auto incrementing number decreases the chances of anyone typing in the wrong number and getting someone elses dna by accident (although the chances of typing in the wrong number increase) and also reduces the chances of storing duplicate data.

    1. This post has been deleted by its author

    2. Gotno iShit Wantno iShit
      Stop

      Agreed. Hell of a lot of tin foil hatted nonsense being spouted forth about this despite absolutely no details being available yet. 100,000 voluntary cancer and rare illness patients represents a very focussed 0.16% of the UK population. GeneWatch would have us think it's everyone without any choice.

      The lack of detail available at this early stage is in complete contrast to the IMP draft bill which is out, examined and positivly identified as bloody awful. Properly implemented this could be a good thing. Just so long as we can keep BAE, GCHQ & a certain Mr Farr away from it there is at least a chance.

      I am mindful though that 'properly implemented' and 'government contract' are generally mutually exclusive. Ho hum.

      1. Anonymous Coward
        Anonymous Coward

        "Just so long as we can keep BAE, GCHQ & a certain Mr Farr away from it" herein the flaw in your argument.

        1. Sir Runcible Spoon Silver badge

          Securing the DB's

          There should be a legal obligation within the design proposal that this DB is strictly *limited* to 100,000 entries and can not be used for any other purpose other than medical research. Criminal penalties attach to the Home Secretary of the day for any breach.

          If they haven't got anything to hide, this wouldn't worry them would it?

  14. Anonymous Coward
    Anonymous Coward

    OK, maybe

    Provided that they treat the non-anonymised sequences as 'Sensitive Personal Data' - only to be stored when a patient has given express consent and only revealed in association with the patient in a minimal set of circumstances, again with patient approval.

    And definitely :

    • No sharing with other public bodies (police, councils etc.)
    • No sharing with EU or other governments.
    • No sharing with Insurance companies or any other 'partners'.
    • etc.
    If they can't handle the simple concept that the data is there solely for the benefit of the population's health, then they shouldn't be allowed to get away with it.

    1. Anonymous Coward
      Anonymous Coward

      Re: OK, maybe

      For the benefit of the population's health - or for the benefit of the individual's health?

      The difference is important (e.g. data mining "secondary uses" of the Summary Care Record system)

      1. Anonymous Coward
        Anonymous Coward

        Re: OK, maybe

        @AC : yep, one ought to be careful with words. I meant the individual's health - "The population's health" does tend to allow for misuse (including making statistical judgements on health matters, rather than treating people as individuals).

        @John Smith 19 : "Now what is the chance of any UK government grasping that concept?. Well none, I suppose. Still, futile though it is, I still think it's worth stating principles : no point expecting them to come from that side.

    2. John Smith 19 Gold badge
      Unhappy

      Re: OK, maybe

      "If they can't handle the simple concept that the data is there solely for the benefit of the population's health, then they shouldn't be allowed to get away with it."

      Now what is the chance of any UK government grasping that concept?

  15. Peter Gathercole Silver badge

    BBC R4 Today program carried an article on this

    In that, a representative of the NHS (can't remember who, and the summary transcript is not on the BBC Web site yet) stated that the genome of (specifically) cancer sufferers would be taken if the patient consented, with a view to try to identify what factors in a person's DNA make-up controlled how a cancer developed once they had the condition. The data would be anonymised so that summary data would be released to research organisations would not contain information able to identify individuals. The fact that it was going to be restricted to people who already have a cancer diagnosis makes the information less useful

    to the insurance industry.

    I know that collecting the data at all (and building the "data infrastructure" to hold it) could only be the tip of the iceberg, but it certainly did not sound like a wholesale sequencing of the entire population. I am as worried about this type of information becoming available to other parties as the next person who gives-a-damn, but from what I heard, it should not yet ring the alarm bells.

    When you consider it, it would be perfectly possible for the NHS to sequence the DNA of any patient who gave any form of blood or tissue sample, but that is not what they were talking about. I'm not even sure whether that would be illegal, because I'm sure that personal medical notes probably contain blood-sub grouping and other information that could be used to identify an individual or their susceptibility to certain conditions already.

  16. The Alpha Klutz
    WTF?

    my DNA is so specific to me that i would not describe it as being anonymous

  17. Anonymous Coward
    Anonymous Coward

    But you forgot to mention that this was only cancer patients, ie. people who are already ill and whose donations would be used to help others.

    Cancer is a terrible disease and we can't really rely on cancer charities alone to stop it.

    1. Aitor 1 Silver badge

      Not A disease

      But many.

    2. AgeingBabyBoomer

      Firstly, there is no guarantee that the DNA database will

      offer any relief/cure to cancer - that's just marketing spiel

      to get us to accept the idea. (In the same way as massive

      internet activity databases are promoted as a way to keep us

      safe from terrorists/paedophiles/drug dealers).

      Secondly, anybody can get cancer e.g. from exposure to

      radiation. No amount of 'good' genes will help you.

  18. James Micallef Silver badge
    Devil

    Theory vs Practice

    In theory this can be a really awesome advance in medicine. Done properly, it could drastically improve health outcomes, especially in the long term, and could open the door to lots of innovative and useful research.

    But, as Yogi Berra is said to have remarked: In theory, there isn't any difference between theory and practice, in practice there is.

    If it's that well known bastion of IT excellence and ciizen privacy that is the British Government that's implementing it......

    1. The Alpha Klutz

      Re: Theory vs Practice

      i say lets get a foreign government in to do it. The Chinese would manage it well I think.

    2. Sir Runcible Spoon Silver badge
      Coat

      Re: Theory vs Practice

      But, as Yogi Berra is said to have remarked: In theory, there isn't any difference between theory and practice, in practice there is.

      Obviously smarter than the average Berra.

  19. JaitcH
    WTF?

    Already they are databasing insurance provided services

    In Boston there is a computer complex that records all the drugs and services provided to North American patients. I say North American because many people in Canada have drug (medicine) paid for by insurance plans. As the system is in the States, the Canadian laws against using the SIN (Social Insurance Number) as an identifier are ignored.

    Anyone applying for insurance has their information checked against this medical 'credit bureau' and if judged a financial risk, coverage is denied or deductibles raised so high that insurance is almost worthless.

    So our medical records (i.e.doctor and hospital) are confidential? Not really, as insurers simply ask for a release and then they have access to our every intimacy.

    There is not much more private than DNA, which is why police want access and why insurers want access. Better stand up NOW and tell that prized idiot Cameron to forget it. Any provisions against divulging your DNA profile are useless as all it takes is a judge a and a policeman lying his teeth off. Not too uncommon these days.

    Governments cannot be trusted and manic course to strip citizens of all and any privacy has t be fought now, not after the b*stards have nothing left to exploit.

    How come, I ask, does Cameron find the money to fund these hair brained schemes yet none to make the NHS do it's prime duty - helping heal people, expeditiously?

    1. Anonymous Coward
      Anonymous Coward

      Re: Already they are databasing insurance provided services

      "as all it takes is a judge a and a policeman lying his teeth off. Not too uncommon these days."

      ..and all it takes for a government to radicalize its population is to force its citizens to submit their DNA through dodgy judicial practices (not too common at the moment, but increasingly so).

  20. Anonymous Coward
    Anonymous Coward

    STOP DEBATING THIS

    There are more important things to worry about!

    Like the difference between Coke and Pepsi.

    McDonald's and Burger King

    Pizza Hut and Pizza Express.

    Why are you worrying about your liberties when you could think about something much more important like your local sports team?

    1. Jemma Silver badge

      Re: STOP DEBATING THIS

      Shouldn't that be Anonymous Cameron?

    2. John Smith 19 Gold badge
      Happy

      Re: STOP DEBATING THIS

      "Why are you worrying about your liberties when you could think about something much more important like your local sports team?"

      There is a fine line between approval and satire.

      I'll give yo the benefit of the doubt.

      1. Anonymous Coward
        Anonymous Coward

        Re: STOP DEBATING THIS

        " your local sports team?"

        Since when was anything about the geographically proximate sports team 'local' - it certainly isn't comprised of 'locals'.

  21. IHateWearingATie
    Mushroom

    Is it just a Monday thing...

    ... or are there more paranoid privacy commentards around today?

    Genetic factor led treatment is probably going to bring about the next really big advance in medicine, which means if you want to benefit (for example, get a personalised cocktail of prostate cancer drugs proscribed) you're going to have to have your DNA sequenced and stored.

    And to develop the technology, lots and lots and lots of people will need their DNA sequenced and put into a database for researchers to work on.

    You have to trust someone, sometime.

    1. Jemma Silver badge

      Re: Is it just a Monday thing...

      hahahahahaha...

      Or

      "Just because you are paranoid doesn't mean they aren't out to get you..."

      Sorry, but when police stop getting away with murder and paedogeddon ruleth not the earth - when men no longer have the emotional range of a teaspoon & social services haven't been thrown out of the shutzstaffeln for bigotry unbecoming then will I trust a government.

      Its gonna be a long wait...

      1. Anonymous Coward
        Anonymous Coward

        Re: Is it just a Monday thing...

        "when men no longer have the emotional range of a teaspoon"

        You're sexist.

      2. IHateWearingATie

        Re: Is it just a Monday thing...

        Three things that have not a jot to do with an NHS held database of a 100,000 volunteer samples.

        The NHS already hold significant information about you that is computerised, and anonymised & sold to medical researchers. Adding DNA isn't that much extra to me.

        Oh, and my wife would probably characterise my emotional range as closer to a ladle, or maybe a large spatula.

    2. Anonymous Coward
      Anonymous Coward

      Re: Is it just a Monday thing...

      77 was inside job

      1. hplasm Silver badge
        Meh

        Re: Is it just a Monday thing...

        No, 77 was Sunset Strip.

    3. Grikath Silver badge
      Facepalm

      Re: Is it just a Monday thing...

      "Genetic factor led treatment is probably going to bring about the next really big advance in medicine, which means if you want to benefit (for example, get a personalised cocktail of prostate cancer drugs proscribed) you're going to have to have your DNA sequenced and stored.

      And to develop the technology, lots and lots and lots of people will need their DNA sequenced and put into a database for researchers to work on."

      And that's the crux, because technically and scientifically you do. not. need. "lots of people" to do genetic typing of Disease X.

      All you *need* is a voluntary donation of people actually afflicted with disease X (thus ensuring that any causative genetic defect is actually present) , and compare that to the already existing "standardised" DNA database called the Human Genome Project, augmented with , also voluntary, local/familial samples to chase down local variation.

      This is a small amount of samples which can easily and effectively be anonimised for the actual research/ comparison (which is part of the actual analytical priocess to begin with...) , while the samples themselves can be destroyed once a complete sequencing has been attained ( also part of standard protocol).

      Where exactly is the need for a large database? The science , technology, and protocols do not require it. At all.. So where's the money?....

      1. IHateWearingATie
        Thumb Down

        Re: Is it just a Monday thing...

        "And that's the crux, because technically and scientifically you do. not. need. "lots of people" to do genetic typing of Disease X."

        Not sure that is correct.

        My understanding (to be fair, limited, as I'm not a geneticist) is that you do need a large group of people due to the difficulty of isolating genetic from epigenetic from environmental factors. it's not enough to get a group of, say 10 pancreatic cancer patients with varying responses to a particular treatment, sequence their genes and be able to say "AHA - I see the pattern".

        A large group is needed to be able to spot subtle patterns - remember that there are very few cases where a single gene is responsible for a disease. Even with something like breast cancer, where there is a single trait that significantly enhances the risk. Having that trait doesn't mean that you definitely will get breast cancer - so what are the other factors? Maybe there is a subtle interplay of environmental factors that influence the expression of a large group of genes (epigenetics) that could be highlighted. You'll only find that with a large group of patients that do have the disease (and very very crucially) DON'T have the disease but do have some or all of the genes and environmental conditions.

        1. Bilious
          Thumb Down

          Re: Is it just a Monday thing...

          Are they going to sequence the tumour in search of tumour-specific genetic changes? If so, it would be relevant for the disease if they found a consistent difference between some of the tumour tissue compared to normal cells. But a tumour may be heterogenous, so which data will have more weight.

          This is a chemical method looking desperately for applications. The money is in the instruments and the hype and in the big data. The Next Black Hole.

      2. lipong
        Thumb Down

        Re: Is it just a Monday thing...

        Well this is not necessary true, the reason for the large database is to uncover unknown associations and to be able to perform large scale association studies, once these are identified then I agree there is no need for large scale collection. But the objectives for this project is to be able to screen a large number of individuals and to see what diseases they developed over the years, how they respond to treatments, etc . and then you can performed more narrow studies like the ones you have mentioned.

      3. MondoMan
        Unhappy

        Re: Is it just a Monday thing...

        Grikath, your confidence in there being only a small number of "causative" genetic defects would be more convincing if you provided some actual evidence in support. The course of the 40-year-plus "war on cancer" would suggest otherwise.

    4. John Smith 19 Gold badge
      WTF?

      Re: Is it just a Monday thing...

      "You have to trust someone, sometime."

      I trust at least 2 people.

      1 is me.

      The other is not you.

      As for this bunch....

      Are you f***ing kidding me?

  22. frank ly Silver badge

    Nice little earner, for some.

    "...the market is ripe to be exploited by private companies hoping to cash in by using these rich datasets .."

    Datasets provided by me, and other NHS patients , via an organisation funded by me and most other adult citizens of the UK. That's my data. You want to make money from it - you pay me an agreed percentage.

    However, I suspect that senior figures in the medical establishment, the Civil service and politicians have already got themselves lined up for 'advisory' positions on several boards, so it'll all go through without objection.

  23. The Alpha Klutz

    if you wanna see what hardcore censorship looks like, check out this shocking example:

    http://forums.theregister.co.uk/forum/1/2012/12/07/tvshack_fine/

    1. Sir Runcible Spoon Silver badge

      Re: if you wanna see what hardcore censorship looks like, check out this shocking example:

      Wow, I saw that comments section before it was annexed - I don't recall there being too much worth deleting (the odd - 'he's guilty of a crime therefore should so the time wank') but nothing particularly libelous - just opinions.

  24. Stephen Channell
    Thumb Up

    Better than the current process

    Currently the bulk of medical research goes into the “treating” (as in not “curing”) ailments suffered by Rich Americans & insurance companies already profile you by where you live, gender, claim history together with fuzzy info from marketing sources.

    As more and more information is digitised and more and more of us give away data to social media sites, the profiles will get more precise, and there is nothing we can do to stop it.

    The biggest threat from a DNA database is that the government will underestimate the value and flog access cheaply. Mapping DNA sequence to medical conditions through large-scale data analysis is much much much more valuable than the few quid you’d get from Insurance companies.

    Whilst the police would love to trawl a DNA database for criminals, the huge value of the database should ensure that it cant be used in that way

  25. rurwin
    Black Helicopters

    It's a trifle expensive

    At current prices it would cost 60 trillion pounds to put the whole population on the database, and about a trillion pounds every year to keep it up-to-date. I imagine even Cameron has better things to do with our money.

    Of course ten years ago it cost 500,000 times as much, so in 2022 it should cost less than a penny to get your DNA sequenced. That's when we need to worry... and the database will be in place and waiting, and the activists will have forgotten about it. The government will be able to privatise it and/or widen its scope without any uproar.

    1. R 11

      Re: It's a trifle expensive

      I don't think 60 million X 1,000 is 60 trillion.

      I'd expect there would also be truly massive economies of scale to be achieved if you were sequencing millions of patients.

      1. rurwin
        Facepalm

        Re: It's a trifle expensive

        I'll just go and bang my head on a wall. Anyone want to sequence my DNA, it says "bonehead" all the way through.

        ;-)

  26. R 11

    Counselling?

    I wonder if they're really prepared for all the consequences of this.

    If a patient's individual DNA is available during personalized treatment, how do they deal with things when they're treating some physical congenital problem, check the DNA report and see that the person is carrying a BRCA gene and is at a higher disposition for breast cancer?

    Of course some people can deal with this easily. But others will not. The psychological impact of telling a new mother that not only is there a significant risk of her developing cancer, but that she might also have passed the gene on to her baby could be severe.

    Do you tell the patient without allowing them to decide if they want to know? How do you tell a patient they might want to think about being tested without it being obvious that you already know? How do you ethically withhold the information once you know?

    What about when we discover a new gene linked to another cancer? Is there an obligation to tell every carrier of that gene? How do you prepare people for that? Is the NHS equipped to deal with 30,000 requests for a hysterectomy in the space of a couple of weeks? Can you ethically leave these people to develop cancer, knowing they're at a significantly heightened risk? Will folk sue because the information was withheld?

    1. OrsonX

      Re: Counselling?

      +1

      My optician has a test that tells me if I have disease X by looking at my eye. I asked him "is there a cure for disease X?"

      Answer: no

      Then I don't want to know!

      Ignorance is bliss. Knowing I am pre-diposed to Parkinson's, etc. would drive me insane with worry.

  27. Evil Auditor Silver badge

    Yes, but...

    "apart from when it is used for an individuals own care" means it won't be anonymised at all.

    And will this massive database fit on a flash memory thingy to be lost somewhere on the tube?

  28. Martin 47

    Of course the data wont be available to just anyone, it will be stored securely in the cloud and managed by a subsidiary of an American company no doubt, so no worries there then.

  29. Anonymous Coward
    Anonymous Coward

    2+2=29472958385

    I'm worried Tesco is going to run out of tinfoil.

    Firstly let me say that this is a topic close to my professional occupation, so I have a fair idea what would be involved.

    This announcement relates to the use of whole-genome sequence data (as opposed to single gene data, already in widespread use) in supporting clinical decisions about which treatment a patient should receive. This pretty much eliminates any insurance concerns, since we are talking about patients who have already been diagnosed with a disease having a genetic component - like cancer. Even if it weren't, there is a moratorium on the use of genetic information in insurance, in place since 2001 and continually renewed - currently lasting upto 2017.

    The current methods of determining treatment are in many ways archaic, and this is simply the next and frankly necessary step in improving patient care. It is true that a person's genome is very sensitive data, but we already have these issues relating to research subject data, for which there is an existing and well thought out data storage strategy (I won't go into details). Applying the technology to clinical care in the NHS is effectively a scale-up problem (from the data side of things at least - there are actually huge clinical challenges still).

    I think it's fairly safe to assume that there is unlikely to be "a database" - that's why "data infrastructure" is used. The raw data for a complete human genome is reasonably large (~200GB), with much additional data required. It is not necessary to keep all this in order to be useful clinically; rather, a derived summary of the differences between your genome and a reference genome is more likely to be the source material for a clinical decision. But to get there, you need an infrastructure - where is the sequencing performed - at a private facility? What about the analysis, in a regional or national centre? And the clinical decision - back in the hospital? It is even by no means a given that the data will even be kept at all for any length of time. It could be destroyed after a course of treatment, for example.

    Put simply, a secure infrastructure for storing and analysing the data still needs to be built, this would be a closed system and is a far cry from your doctor having your genome on a USB stick. There is simply no need for the data to ever leave the walled garden, and no real need in particular for it to be "a database" in the sense of it all being in the same place.

    1. DragonLord

      Re: 2+2=29472958385

      When I was a Uni a database was considered any easily searchable, structured store of data, hence in my comment above I mentioned tongue in cheek that patient data could be kept on card files.

      As such I suspect that you can only reasonably say is it probably won't be running on oracle, sybase, sql server or similar.

      I also suspect that they will want to keep the data well after the patient no longer needs the treatment as the only way to find long term patterns is to build up a history of data as well as having lots of current sources.

      1. Anonymous Coward
        Anonymous Coward

        Re: 2+2=29472958385

        No, I mean database in the sense that it's all in the same place, can be searched etc. i.e. your definition. It does not need to be a database, hence why it has not been called a database in the announcement.

    2. Anonymous Coward
      Anonymous Coward

      urrently lasting upto 2017.

      As someone already suffering institutional discrimination at the hands of the cowards in the insurance industry, let me just say that they will never get my DNA. Not after 2017, nor in the coldest depths of frozen hell. never.

    3. John Smith 19 Gold badge
      Thumb Down

      Re: 2+2=29472958385

      "Firstly let me say that this is a topic close to my professional occupation, so I have a fair idea what would be involved."

      "Trust me, I'm a professional."

      "It could be destroyed after a course of treatment, for example."

      Trouble is the UK govt has a history of not destroying data when it's no longer relevant.

      Like when it's the DNA of suspects who were never charged with a crime.

      "There is simply no need for the data to ever leave the walled garden, "

      Need, no. Sell onward certainly possible.

      "and no real need in particular for it to be "a database" in the sense of it all being in the same place."

      As indeed is the infrastructure for the other Governemt "flagship" programme "Communications Data Bill"

    4. MondoMan
      Unhappy

      Re: 2+2=29472958385

      Perhaps there's no *need* for genome sequence to be in one place, or to be kept indefinitely, but certainly the tradition and expectation in the medical community is that everything be included as part of an individual's medical records. Genome sequence would surely become a part of that.

    5. Bilious

      Re: 2+2=29472958385

      And where is the guarantee that the dataset is correct? A full-genome sequence isn't 100 percent correct; besides it isn't complete: it's still a selection. So it is more suitable for research than for individualised treatment.

      Individualised at what level? Drugs designed for that specific genotype, different from all the 280 other relevant genotypes - or just simple pre-emptive surgical removal of breasts and ovaries based on a family history and a few specific genetic tests?

      How about spending a few hundred million on an effective campaign against tuberculosis - with real and effective treatment available today. Or a political decision to curb the wildest marketing of unhealthy foods.

      Ah no - there's no Big Money to be made from such efforts. On the contrary.

    6. Vic

      Re: 2+2=29472958385

      > It is even by no means a given that the data will even be kept at all for any length of time

      Yeah, it is. Look at who's proposing it...

      Vic.

  30. Red Bren
    Big Brother

    2 tinfoil hats required today.

    Step 1) The government builds a big database of everyone's DNA to cure CANCER!!! You do want us to cure CANCER, don't you?

    Step 2) The government builds a big database of everyone's internet use to catch TERROR-PAEDOS!!! You do want us to catch TERROR-PAEDOS, don't you?

    Step 3) The government cross references the two databases to find the gene for TERROR-PAEDOISM!!!

    It's for the good of the children. Won't someone think of the children? STOP THINKING ABOUT THE CHILDREN YOU TERROR-PAEDOS!!!

  31. Christoph Silver badge

    How do I change it?

    If someone gets my password I can change it.

    Will the government make it easy for me to change my DNA every time the database is penetrated or is handed over to the security services?

    Surely they wouldn't put me in a position where once my extremely private data is compromised I can never ever repair the damage?

    1. MondoMan
      Devil

      Re: How do I change it?

      It's very very easy to change your DNA sequence -- just stand in front of a nice high-intensity penetrating ionizing radiation source. Best of all, different cells will have different parts of their DNA sequence changed -- talk about obfuscation!

  32. Anonymous Coward
    Anonymous Coward

    Opt out?

    Where is the opt out???? Or the only way to opt out is not to use NHS anymore?

    Never trust anybody, especially the government with your personal data (and what's more personal than a DNA?)

    How can you anonimise DNA data??? Replace it by random gene???

    1. bogwoppit

      Re: Opt out?

      1. Opt out is easy, because it is opt-in only. It says this in the statement.

      2. Anonymous in the sense that it is not attached to your name or other details when it is passed through the analysis ecosystem. So some software somewhere knows that there is a person associated with a huge pile of data, but not who they are. Just like I know that there is a person who just arranged all those characters in your comment, but I don't know who they are so it's not very useful.

      1. Yet Another Anonymous coward Silver badge

        Re: Opt out?

        1, it's opt-out for now. Just like computerised medical records, it's opt-out if you write to 6 different depts demanding that your records not be included.

        2. anonymous in the sense that it only records your postcode, the procedure you went in for and the prescription details of any drugs you needed. The prescriptions are filled in at your local chemist with your name address, and clubcard number. Or at least that's what happened with a had-to-be-abandoned breast cancer trial here.

  33. Anonymous Coward
    Anonymous Coward

    Its already here...

    A DNA sample is already taken from newborns [with parental consent] to test for some very rare genetic disorders. You will note there is no mention of destruction of the sample or deletion of the record on the following page...

    http://www.nhs.uk/chq/Pages/818.aspx

    AC obviously

    /tinfoil

  34. This post has been deleted by its author

  35. Anonymous Coward
    Anonymous Coward

    Tabloids

    Well this will make life easier for tabloid newspapers, who'll be able to uncover more "secret love children" of the stars, as and when they bribe their way into the database.

    Oh, and due to the high levels of scientific and medical training of yer average tabloid hack, prepare for them to name and shame guilty sex offenders before the police have even have that person in the frame based on their own notion of what constitutes a DNA match.

    The police will have access to this database, as will medical staff - both of which are primary sources of information for tabloids.

  36. The Alpha Klutz
    Megaphone

    Are we really prepared to say

    That what a scientist calls "damaged DNA" or "damaging variations" or, fuck it, lets just go out in the open and call them Bad Genes like the old school eugenicists did. Anyway, are we really prepared to believe that what a scientist may look at and call Bad Genes, are not actually the source of the human soul?

    1. The Alpha Klutz
      Megaphone

      IN 2026 I PREDICT

      An army of DNA wardens will go around swabbing people and handing our petty fines for unauthorised variations in DNA. The government will have to make money somehow and nobody will drive in 2026 due to being in a police state at the time.

      1. Yet Another Anonymous coward Silver badge

        Re: IN 2026 I PREDICT

        No Apple will have patented all the genes and anybody with rounded corners will be fined.

        This will lead to a huge boost in fitness and replace beer guts with 6-pack abs.

        1. Anonymous Coward
          Anonymous Coward

          Re: 6-pack patent

          Yeah, but a 6-pack looks like the icon arrangement of an iPhone screen, so that's protected too.

          I reckon we'll all end up in MK III travel machines yet...

    2. This post has been deleted by its author

    3. Red Bren

      I'm prepared to say

      These "bad genes" are not the source of the human soul! But I am not a geneticist so I'm prepared to be corrected by hard evidence.

      I also don't agree with the concept of good and bad genes. The gene that causes sickle cell anaemia also offers protection against malaria, so is it good or bad? http://malaria.wellcome.ac.uk/doc_WTD023878.html

  37. lipong
    FAIL

    Again as with many articles ripped from the main media...

    Again as with many articles ripped from the main media the register should have a their science correspondents investigate a bit further before copy-paste.

    I have personally worked with patient data similar to the data what is being proposed to be collected, first this data will not have any personal details they are not relevant for biology, (biology does not care if you are called called Peter or John) biological relevant data such as: height, blood pressure, etc will be collected .

    So the genetic data will be accompanied with a series of bio-relevant data , in some cases such as in Biomedical Demographic studies, social data might collected such as the place you live, income, etc.

    In any case in the first instance (5-10 years likely) these databases are for R&D purposes and will be completely anonymous and then after many years of research and IF we find some conclusions then the doctor that will treat you will be the only person that has access to both sets of data (personal details+genetic data). There is a whole new field(Medical Informatics) that has been discussing this issues as well as the methods to implement secure and efficient data sanitation.

    All this does not prevent insurance companies or any other company from using advances in biological research to screen persons either via genetic tests or any other methods, so its up to the law to protect people much in the same way that for example people from different ethical groups should not (I hope/believe that the law protects against this) be treated differently.

  38. Anonymous Coward
    Anonymous Coward

    HAVE A GLASS OF WARM MILK AND GO TO SLEEP

    Our scientists and technocrats will do the rest.

  39. Tim Brown 1
    Pint

    It's reading reports like this...

    ... that makes me quite glad the world ends on 21st December*

    *NASA have claimed there's no foundation in the Mayan prediction, but what do they know!

  40. AgeingBabyBoomer
    Flame

    If big pharma is so keen and confident about developing gene-based

    therapies, why aren't they stumping up the £100m to build the database?

    After all, they will be the ones cashing up the profits.

  41. John Smith 19 Gold badge
    WTF?

    Governement still not getting it. It's not *their* data to sell on

    It's the patients data.

    It's not your resource

    Note that this comes from the Dept of Business not the dept of Health

    Concerned.

    You'd better be.

  42. John Smith 19 Gold badge
    Thumb Down

    "Cancer." It's like paedos and terrorists for the Data Communcations Bill.

    The thin end of a very long wedge.

  43. Anonymous Coward
    Anonymous Coward

    Godwin

    <Insert your own totalitarian reference here>

  44. Anonymous Coward
    Anonymous Coward

    Cameron's DNA?

    100% match with the DNA of a short rectangular piece of wood.

  45. All names Taken
    Joke

    repeat after me?

    We are UK subjects.

    We are subject to the whim of our political masters provided UK civil servants let them do so in the way they choose.

    icon: joke alert

    (oh the irony?)

  46. Richard Cranium

    Keep me alive as long as possible...

    Most deaths are down to heart or cancer. Fix that and we can all look forward to years of undignified and costly dementia and incontinence. Thanks.

  47. Anonymous Coward
    Anonymous Coward

    Hello Mrs AGCATGCTGCAGTCATGCT.....

    How is Mr ATGCTAGCATGCTGCAGTCATGCTGCAGTCATGCT... today?

  48. Trollslayer Silver badge
    Thumb Down

    Network guy?

    Sorry but you have managed to COMPLETELY miss the point of this project.

    The point is that treatments, particularly those related to cancer have different effects on different individuals and given the way targeted treatments are being developed determining genetic factors will help emormously.

    As to Genewatch UK - that are against anything involving genetics.

    Sequencinga genome for £1,000 - that is simply the first stage of the process and frankly I found the wole article to be driven by Genewatch's agenda by someone who appears to have no understanding of the medical issues.

  49. contraryview
    Thumb Down

    Need a matching organ donor

    This could make it easy to find an matching organ doner .. or could allow some sick rich individual a quick fix at your expense!

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