Sweden Considers Making DNA Donated Purely For Medical Research Available To Police And Insurance Companies

from the so-what-if-we-promised-we-wouldn't? dept

Mon, Jul 11th 2016 10:13pm — Glyn Moody

When it comes to biometrics, you really can't beat DNA. You can always erase your fingerprints, or wear contact lenses to fool iris scanners, but there's no way of changing all your DNA enough to make it unrecognizable (even with the new CRISPR technique). Couple that with the fact that we are shedding DNA everywhere we go -- leaving tell-tale markers on everything we touch -- and you have the perfect surveillance mechanism. That's why earlier UK plans to give police access to medical databases are problematic, to say nothing of Kuwait's mandatory DNA database for all citizens, residents and visitors. Now Rick Falkvinge has written a post about troubling moves in Sweden:

Since 1975, Sweden has taken a DNA sample from all newborns for medical research purposes, and asked parents’ consent to do so for this research purpose. This means that over time, Sweden has built the world's most comprehensive DNA database over everybody under 43 years of age. But now, politicians are considering opening up this research-only DNA database to law enforcement and private insurance companies.

As Falkvinge points out, this is not just a betrayal of a trust, it is totally counterproductive: This is, of course, an outrageous and audacious breach of contract with the parents who were promised the sample would be used only for the good of humanity in terms of medical research. The instant there's a mere suspicion that this will be used against the sampled newborn in the future -- as is the case now -- instead of being used for the good of humanity as a whole, people won't provide the DNA database with more samples, or at least not enough samples to provide researchable coverage.
The risk that Sweden might proceed down this road is also a reminder that once such huge databases are created, it is almost inevitable that one day someone will come along and say: "since we have this information, surely nobody could object to it being used to catch terrorists/pedophiles/rapists etc. etc." And as the news from Sweden shows, initial promises that such sensitive data will only be used for research are worthless, since they can always be revoked later on, and there is no easy way of removing the data once it is on the database.

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Filed Under: dna, information, insurance, law enforcement, medical research, police, privacy, sharing, sweden

26 Comments

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Anonymous Coward, 11 Jul 2016 @ 10:59pm

Promises
If they decide to ignore the promises that were given in order to get these samples, they do not deserve to remain in power. Sue them and if that doesn't work, revolt and start over. Governments do not require access to private medical information like this, they just want it. Huge difference.
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Whoever, 11 Jul 2016 @ 11:40pm

And this is why you should never cooperate
What this example shows is that any act of cooperation in the name of improving overall health will be abused.

It's like that time when the CIA used vaccinations as cover for intelligence gathering. The effect of such betrayals is overall negative to society, but the psychopaths running these agencies cannot see past their own goals.

Summary: no good deed goes unpunished.
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David, 11 Jul 2016 @ 11:57pm

Sigh.
Trusting a government to not step out of line during all of your descendents' life is like negotiating with a dragon egg on the assumption that its mobility will never exceed that of an omelette.
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Anonymous Coward, 12 Jul 2016 @ 12:27am

This absolutely is outrageous that Sweden is even considering doing this. If the parents were told 40 years ago that eventually the samples they gave consent for for medical research would eventually be used as a law enforcement database most of them would have rightly objected to it and refused.

This makes me think of Ancestry.com and their dna testing I always see them advertising on tv. It's not that unrealistic to see the US govt, or others, wanting access to the database one day, if they haven't already, and even using the ridiculous third party doctrine to get it since people are voluntarily giving this info to them.
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Anonymous Coward, 12 Jul 2016 @ 1:54am

that's bullshit, i have never been asked to give DNA from my kids at birth here in Sweden, an we have 5 kids.
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David, 12 Jul 2016 @ 3:16am

Re:
Yes, we know. Though the both of you haven't quite got the same 5 kids.
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art guerrilla (profile), 12 Jul 2016 @ 3:41am

Re: Promises
*sigh*
if only revolution were that easy...
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That One Guy (profile), 12 Jul 2016 @ 3:45am

"I have altered the deal, pray I do not alter it further."
The instant there's a mere suspicion that this will be used against the sampled newborn in the future -- as is the case now -- instead of being used for the good of humanity as a whole, people won't provide the DNA database with more samples, or at least not enough samples to provide researchable coverage.

If they're willing to change what the database is used for retroactively I wouldn't put it past them to remove the request part of the collection, and simply make it mandatory, for 'law enforcement/counter-terrorism/counter-crime/counter-communism' reasons of course.
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David, 12 Jul 2016 @ 4:02am

As if closing Pandora's box again is going to help...
The instant there's a mere suspicion that this will be used against the sampled newborn in the future -- as is the case now -- instead of being used for the good of humanity as a whole, people won't provide the DNA database with more samples, or at least not enough samples to provide researchable coverage.

This is not how DNA works. If they know a son of my parents was at a crime scene, they most certainly have enough probable cause to test the siblings. As long as a sufficient amount of people does not give their children away to genetical strangers at birth, the database remains useful for tracking down people based on DNA traces.
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Ninja (profile), 12 Jul 2016 @ 4:25am

If it can be abused it will be abused at some point. Haven't we learned it already?
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Rye Guy, 12 Jul 2016 @ 5:03am

Swedes are in Denial about the occupational government
When the occupational government was exposed as spying on citizens in the US without court orders, Swedes smugly claimed that 'their' government would never do that but of course the vichy government in Sweden has been doing it even longer than in the US.

The same turned out to be the case for propaganda and even torture.

Oh, media in the US is biased? Well US companies own your media companies.

Why do people in the US not trust governments?

Because they're not naive.
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Anonymous Coward, 12 Jul 2016 @ 6:27am

Re: Re: Promises
Yep, you can't even get past all the people that ignore the slippery slope alarmists.

Anything that actually pays attention can see shit coming a mile away. We all wear blinders because taking them off means we have to acknowledge more problems than we are willing to.

It really does have to get worse before it can get better because it is just too easy for the Governments of the World to bank on the apathy of its people.

This is why EVERY nation gets the government it deserves.
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Anonymous Coward, 12 Jul 2016 @ 7:57am

And had you suggested, even a few years ago, that this would happen, you'd have been labeled a "conspiracy theorist" or a "tinfoil hatter."
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notswede, 12 Jul 2016 @ 8:11am

Aaactually, that was only little extra data to convince everyone that Swedes are doing it already.
Apparently someone started asking questions and now goverment want to make it legal...
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DannyB (profile), 12 Jul 2016 @ 8:33am

Re: Re: Re: Promises
It's refreshing to see someone as cynical and distrusting as I have become. It's so easy to be unwilling to see how bad things are and how much worse they are going to get.
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DannyB (profile), 12 Jul 2016 @ 8:34am

Re: And this is why you should never cooperate
They can only see their short term interests. What they need right now.

Oh! Just like corporations. We'll shoot ourselves in the head if it will increase this quarter's profits -- and let someone else deal with what happens three quarters from now.
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DannyB (profile), 12 Jul 2016 @ 8:42am

Re: Swedes are in Denial about the occupational government
I almost quit watching CNN after the total lack of SOPA coverage, and then sudden begrudging coverage once they had no choice.

I did quit in 2013 after the totally uncritical one sided coverage of Snowden.

I have since become aware that there are foreign media outlets that sometimes cover things not even discussed in US media. Or that is drowned out by US media coverage of the rantings of presidential candidate Cheeto face.
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Anonymous Coward, 12 Jul 2016 @ 8:55am

Re: Re: Re: Promises
This is why EVERY nation gets the government it deserves.

Most people are not that interested in politics, all they want is the roads to be mainatined, the garbage to be collected, and the governments to run social services at a reasonable level of taxation. Therefore nations end up with the government that they will tolerate, and so long as the majority will tolerate the government , nothing much will cahnge.
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Anonymous Coward, 12 Jul 2016 @ 10:32am

Re: And this is why you should never cooperate
Me thinks that this is just to legitimize the access that they have already hacked their way into and don't want to keep parallel constructing.
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Uriel-238 (profile), 12 Jul 2016 @ 11:00am

Re: Re: Re: Promises
All civilizations are made with the same human beings with the same biases and the same foibles.

Either we adapt a philosophy that exploits these weaknesses for personal gain, or we adapt one that exploits these advantages for those who have them.

The former game ends up making most people miserable and servants of the lucky few. We've never tried the latter game.
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Anonymous Coward, 12 Jul 2016 @ 11:16am

Re:
Maybe you should look into the past records to see if it was done. I could see them bypassing the 'request permission' stage
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David, 12 Jul 2016 @ 12:05pm

Re:
No. That's why you get voted "Insightful" rather than "Platitude".

One would expect this to be an easy lesson to learn. But abuse requires power, power draws admiration, and admiration excuses abuse.

The result is a human history full of "are you fucking kidding me?" developments. And we are still going at it full tilt.
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Anonymous Coward, 12 Jul 2016 @ 5:16pm

Aussies do it too
I believe that the Australian federal government has had a scheme like this in place for around the same amount of time where blood samples we taken & stored, (dried I expect) & there was talk at one stage to open this up to private groups such as insurance companies to "have a look at".

Purely in the best interests of their customers of course /s
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Padpaw (profile), 12 Jul 2016 @ 5:40pm

I wonder how much those politicians were bribed with
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That One Guy (profile), 12 Jul 2016 @ 10:05pm

Re:
Here's the messed up part: They don't actually have to be bribed for something like this, they just need to realize that protecting the rights of the public and their constituents garners less good PR than the alternative, and in fact can actually result in negative PR if someone's sleazy and opportunistic enough to take the cheap shot.

'Defending the rights of the public', or in this case 'Protecting the privacy of data originally gathered and explained as purely for medical research' is trivially easy to spin as 'Obstructing law enforcement by blocking their access to data that would allow countless cases to be resolved quickly'.

Police/government agencies/anyone else just want the data to stop criminals/terrorists/communists, what kind of criminal/terrorist/communist loving monster could ever stand in the way of something like that? I mean sure, people were told that the data would only be used for a specific, non-law enforcement reason, but such a valuable commodity like this, surely it's for the betterment of the country that it's use be expanded a bit, Because criminals/terrorists/communists and Be Afraid.

The voyeurs love them some private data, the more the better, and they are fully willing to act as sleazy, and use the lowest tricks possible in order to get as much of it as they can. If that means retroactively changing the use of a database to allow them access to massive amounts of data they'd otherwise never be able to obtain, they are fully willing to lie and claim that anyone objecting supports criminals/terrorists/communists in get it.
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Anonymous Coward, 13 Jul 2016 @ 10:47am

Re: Re: And this is why you should never cooperate
Very unlikely, the article does not mention it, but the "database" is a collection of blood samples on paper slips, it is not a digital or searchable database by any stretch of the imagination. For now at least

That being said, the samples have already been used on three occations, one for a murder, another for the murded of a politician in the early 2000's and once to confirm identities on people killed in the east asia tsunami catastrophy. I could give them a pass on the tsunami victims, but the other is nowere near ok
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