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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 such …

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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.

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Trollface

Re: GATACA

Sounds like appraisal time around here....

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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.

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Re: GATACA

IQ is an indicator of being good at IQ tests.

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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."

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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.

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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.

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Boffin

Re: GATACA

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

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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!

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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.

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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.

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Vic
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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.

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Vic
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Re: GATACA

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

... With an IQ of 100...

Vic.

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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.)

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Coffee/keyboard

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

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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.

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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.

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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.

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This post has been deleted by its author

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.

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Anonymous Coward

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

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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?

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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.

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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)

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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?

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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.

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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.

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WTF?

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

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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.

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Not A disease

But many.

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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.

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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......

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Re: Theory vs Practice

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

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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.

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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?

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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).

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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?

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Re: STOP DEBATING THIS

Shouldn't that be Anonymous Cameron?

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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.

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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'.

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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.

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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...

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Anonymous Coward

Re: Is it just a Monday thing...

77 was inside job

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Anonymous Coward

Re: Is it just a Monday thing...

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

You're sexist.

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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.

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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?....

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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.

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Meh

Re: Is it just a Monday thing...

No, 77 was Sunset Strip.

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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.

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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.

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