Plans for NHS database of patients' DNA angers privacy campaigners

http://www.guardian.co.uk/politics/2012/dec/09/dna-database-nhs-gene-genomics

Not someone from the Department of Health or the ICO? There's an obvious reason for people to get very antsy about it very quickly, right from the off.

I think there's a problem with the general approach to how public sector bodies collect data of all types on citizens. It's a relatively new possibility, but we keep trying to crowbar it into existing state structures that have other primary responsibilities. So the police collect some and use it for policing, the NHS and the DVLA and all the others do their own thing within their silos.

It would be better to create a new structure dedicated to citizen data which would serve as repository and gatekeeper, and would grant access according to its own particular ethical standards, which take the data itself as the starting point. All agencies put their data in, nobody gets it back out without a permit. Data mining would be a special privilege and in each case must be justified, and where appropriate anonymised.

That way the benefits of having this data can be enjoyed, but the misapplication can be restricted.

A request for access would have to be granted immediately if the Department for Work and Pensions, NHS and HMRC are going to operate effectively. They also all collect different types of data about individuals.

I will be opting out of this database, assuming it will also cover Wales. I don't like the idea of the nation's health records - be they anonymised or not - being sold to make money for the Treasury.

It's also not hard to see that it wouldn't be long before the Police were granted access and it's used as a replacement for DNA records stored on the PNC.

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Eventually it will become mandatory to provide DNA for collection of benefits or pensions, or driving licenses or passport.

IMO I'd be against this. Who "owns" your DNA once it's on the database? Who has responsibility if something goes wrong or it gets lost? What if they discover something horrific eg you have the potential to have, say, pancreatic cancer? If they inform you, do you spend your time worrying? Do you take pre-emptive surgery (bearing in mind you'll be on insulin and supplements for the remainder of your life)? Do you do nothing? How will this affect insurance premiums? Is it just more excuse for the insurance companies to increase premiums based on your DNA?

It's the same old bollocks about private companies enhancing our lives without anything concrete even being said, never mind agreed. I struggle to remember when that DIDN'T result in the taxpayer subsidizing them... Also begs the question, just who has Mr Cameron been talking to?

What they will do is harvest all the data and then give the data to companies who might use it for purposes not disclosed. You could find yourself being denied health insurance because of your DNA and even if you do not know what is in your DNA the insurance companies will be able it to write unenforceable policies or simply price you out of insurance altogether.

We seem to have two types of complaint.

Slippery slope arguments are easily neutralised by making provision to prevent the relevant misuses, by, for instance, simply banning insurers from accessing such data on the grounds that the purpose of insurance is to mutualise risk rather than weed it out. This is easily done before or after the fact.

The principle arguments are based on the inherent lack of trust in the institutions collecting and handling the data. The problem is that lots of useful stuff can also be done with that data - especially given that a DNA database is only one example of the big data types that could become available and the real value is based on cross reference and inference. That's why I recommend the creation of a new institution, designed to be first and foremost a trustworthy custodian of this stuff.

It's not a new idea. When the army and the police force were created there were widespread concerns about billeting of troops in people's houses and political oppression. These concerns were well founded on experience of the preceding institutions - largely criminally rapacious in both cases. But none of you guys thinks twice about whether we should even have policemen and soldiers today because we obviously need both and they belong to politically semi-independent organisations, each with a strict code of ethics particular to its realm. So we largely trust them not to rape our daughters and and eat our poultry in a way that our ancestors had every reason not to.

The same can be true of civil surveillance if we put in the effort to consider what form of institution would provide the benefits with sufficient accountability. Alternatively you can swim against the tide, complaining about one database after another, while in each case 10 more that you have never heard of acquire your information and use it in secret.

You make very valid points. My concerns are that the government will abuse the database. I do see significant benefits for a child only database which is solely for the tracking of missing children, such as Madeleine McCann. My concerns are abuses by councils who abused the previous relaxation in data access. Unless there are serious restrictions it will be abused.

And just as easily changed after the fact, should the government put it's mind to it. Once they've got the data, if they then decide to do something with it we don't like, what influence do we have to prevent it? 'We'll vote you out at some point in the future'? Fine lot of good once the proverbial cat is out of the proverbial bag. I don't want them to tell me they won't abuse it. I want the thing to be set up in a way that means they can't abuse it. Unfortunately, I can't see how that could be guaranteed.

If you could explain how a DNA archive could be set up in such a way that a future government could not change the terms and conditions under which the data in it is kept and shared in way I or someone else would not have agreed to at the time it was harvested, I'm all ears.


The fact that something would prove useful does not negate the fact it could also be used unscrupulously or for the benefit of corporations rather than individuals. There's a cost/benefit decision to be made, and you're only considering the 'benefit' side.

As for a 'trustworthy custodian' of my data, I've already got one. Me.


It's a good job we're not all so staggeringly defeatist.

Jon

Can you guarantee that the army will never turn their guns on parliament and install Michael Barrymore as an emperor?

If not, does that mean we must disband the army?

If not, does that mean you trust the British army?
If it was similar to the Syrian army you wouldn't trust it not to kill civilians would you?
If it was like the Egyptian army you positively expect it to overthrow the government one day.

But if, like me, you really don't expect the UK army to do those things, it might be worth spending a few moments to think about why.

After all, when the first standing army in Britain was created, those things above are exactly what everyone expected of it. And the same expectation accompanied the same institution in America. Both countries used the same solution to that. I am suggesting using it again.

I'm struggling to see the relevance of public trust in the British army as a corollary to our trust in the self-seeking nature of politicians not to sell out to the highest bidder. Are you suggesting the amount of public trust in the armed forces and politicians is, or should be, the same?

I'm trying to draw attention to how different organs of state relate to each other; what are the limits of their interactions; and what ethical status and duties does each party have when one arm of the state requests action from another. There's an ethical barrier between parliament and the army for instance which limits the types of orders a politician can issue and expect to have obeyed. This is by design, the institution of the army was consciously developed to make oppression by the army impossible.

So my point is that such institutions can be created responsibly, with an internal ethic, and a duty to resist inappropriate external pressure to misbehave. Trust in politicians is not required if you have police, doctors, soldiers and so on who you do trust to refuse dodgy orders.

Should it happen (personally I think it's ID card mark 2, but anyway) the people holding the data won't be doctors, soldiers or police officers or others with an established ethic of public service and confidentiality. They'll be whichever third party corporation the job of handling the data warehousing for the project gets farmed out to. Lockheed Martin maybe. They're completely ethically spotless after all. Or maybe G4S will get the job.

Either way, they won't have your or my interests at heart. At all.

Jon