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When a DNA Testing Firm Goes Bankrupt, Who Gets the Data?

timothy posted more than 4 years ago | from the how-about-blue-cross-blue-shield dept.

Privacy 114

wiedzmin writes "DeCODE Genetics, a genetics research firm from Iceland, has filed for bankruptcy in the US, and Saga Investments, a US venture capital firm, has already put in a bid to buy deCODE’s operations, raising privacy concerns about the fate of customer DNA samples and records. The company hasn’t disclosed how many clients signed up for its service, but provides a number of customer testimonials on its site, including Dorrit Mousaieff, Iceland’s first lady."

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114 comments

Destroy and burn them. (1, Insightful)

Anonymous Coward | more than 4 years ago | (#30148336)

Clearly, the answer is that any samples and documentation should be destroyed. A typical way of doing this is to shred any paper documentation, and incinerate it along with any tissue or DNA samples.

Re:Destroy and burn them. (1)

PopeRatzo (965947) | more than 4 years ago | (#30149916)

Of course. There's no reason that a DNA testing firm should be keeping the results of the DNA tests on file after they've been delivered to whoever ordered those tests.

Use the model of anonymous drug testing. I can order that a sample be drug tested with only a serial number identifying it. It's common that medical tests for HIV, Hepatitis-C and sexually transmitted diseases are done on samples without information that would identify the person being tested.

I have no doubt that companies that do DNA testing hope to be able to "monetize" that information at later date. Otherwise, why would they require - and maintain - information that would identify the person being tested?

Another example of how what's good for the "free market" is not always good for people.

Re:Destroy and burn them. (0)

Anonymous Coward | more than 4 years ago | (#30151506)

Destroyed? How silly. Information wants to be free! Release it under a creative commons license!!

This is why I protected myself (5, Funny)

Anonymous Coward | more than 4 years ago | (#30148348)

I spliced in a trojan to my DNA. If I'm cloned in anything but my specific method, I'll instead turn out as a 70ft tall dinosaur human hybrid with fire breath, laser beam eyes, and the ability to fly. I dare them to clone me.

Re:This is why I protected myself (1)

gedrin (1423917) | more than 4 years ago | (#30148606)

Huh...Bill Gates just disables the ability to assimilate vaccinations on his.

Re:This is why I protected myself (1)

shentino (1139071) | more than 4 years ago | (#30149452)

Good God...NO NO NO!

DRM is bad enough in media. We do NOT need it in our DNA!!!

Re:This is why I protected myself (1)

Ihmhi (1206036) | more than 4 years ago | (#30151444)

I was wondering what that Bittorrent DNA stuff was... now I know!

Re:This is why I protected myself (1)

sentientbeing (688713) | more than 4 years ago | (#30149578)

I licensed my DNA to my offspring, its closed-source with a limited distribution policy.

Re:This is why I protected myself (3, Funny)

Anonymous Coward | more than 4 years ago | (#30150004)

On the other hand, your mother had a quite liberal distribution policy.

Re:This is why I protected myself (1)

daniorerio (1070048) | more than 4 years ago | (#30154152)

I lolled very hard, damn you. The coffee, it's everywhere!

Re:This is why I protected myself (1)

MarkvW (1037596) | more than 4 years ago | (#30150514)

If you licensed your DNA so carefully, then how did it end up at the crime scene? and on the toilet? and on the barbershop floor?

Re:This is why I protected myself (1)

49152 (690909) | more than 4 years ago | (#30154218)

If you licensed your DNA so carefully, then how did it end up at the crime scene? and on the toilet? and on the barbershop floor?

Obvious cases of copyright infringement, damn those pirates!

Re:This is why I protected myself (2, Insightful)

Anonymous Coward | more than 4 years ago | (#30150184)

> I dare them to clone me.

Y'know, some people would then clone you just because they wanted the dinosaur, not you.

Well, people other than Randal, maybe...

Re:This is why I protected myself (1)

AnotherUsername (966110) | more than 4 years ago | (#30150218)

I spliced in a trojan to my DNA. If I'm cloned in anything but my specific method, I'll instead turn out as a 70ft tall dinosaur human hybrid with fire breath, laser beam eyes, and the ability to fly. I dare them to clone me.

Can you send me the DRM package you put into your DNA? I want to use it for mine, but include my consciousness as well. And then, time to start cloning myself. Dinosapien army, all to myself.

Re:This is why I protected myself (1)

PachmanP (881352) | more than 4 years ago | (#30152002)

Can you send me the DRM package you put into your DNA? I want to use it for mine, but include my consciousness as well. And then, time to start cloning myself. Dinosapien army, all to myself.

Veto! We do not need MORE dinosapiens surfing slashdot.

Re:This is why I protected myself (1)

nitehawk214 (222219) | more than 4 years ago | (#30151496)

Well my clone will be a witty and sarcastic teenaged version of myself [imdb.com] .

Re:This is why I protected myself (1)

ignavus (213578) | more than 4 years ago | (#30153522)

I spliced in a trojan to my DNA. If I'm cloned in anything but my specific method, I'll instead turn out as a 70ft tall dinosaur human hybrid with fire breath, laser beam eyes, and the ability to fly. I dare them to clone me.

How is that different to what you are now?

PS: On the Internet no one knows you are a 70ft tall dinosaur human hybrid...

$5 says they... (4, Insightful)

DomNF15 (1529309) | more than 4 years ago | (#30148362)

sell the customer data to some health insurance company.

$5 says they... (2, Insightful)

iammani (1392285) | more than 4 years ago | (#30148462)

Sell it to researchers, since insurance company wouldnt benefit much from such a small set of DNA samples. Or else just discard everything except DNA of famous people (in case they have any) and auction it!

Re:$5 says they... (1)

PopeRatzo (965947) | more than 4 years ago | (#30150042)

since insurance company wouldnt benefit much from such a small set of DNA samples

But for how long will it be a "small set" of DNA samples? Every year, more people are getting DNA tests. DNA testing is becoming common for fetuses, and anyone who gets caught up in the criminal justice system. And since the USA has a bigger percentage of population in the criminal justice system than any other country, I imagine there's going to be a nearly comprehensive set of samples sooner than you think.

You better believe that's a sample size that the insurance companies would love to get their hands on.

Re:$5 says they... (3, Interesting)

jc42 (318812) | more than 4 years ago | (#30150462)

sell the customer data to some health insurance company.

Sell it to researchers, since insurance company wouldnt benefit much from such a small set of DNA samples.

You're probably both right.

As many armchair econ theorists here have been pointing out repeatedly, the attempted purchaser is an American corporation. As such, their primary (and according to some, only) obligation is to the bank accounts of their officers and shareholders. If there's a commercial value to the information, they likely consider it immoral to not sell the information for whatever price the market will bear.

The fact that mere "citizens" might be upset by this only means that they'll do this quietly, with no public notice and no records of the sales available to outsiders. If we learn of the sales, it'll be far too late for us to do anything about it.

Expecting anything else is simply naive. We should be assuming that, if anyone has had the opportunity to collect a sample of our DNA, they have done so, and the information is in the databases of anyone willing to pay the asking price. This especially applies if you have ever had any dealings with a private, for-profit medical organization.

Re:$5 says they... (1)

Fulcrum of Evil (560260) | more than 4 years ago | (#30151862)

As such, their primary (and according to some, only) obligation is to the bank accounts of their officers and shareholders. If there's a commercial value to the information, they likely consider it immoral to not sell the information for whatever price the market will bear.

Bullshit. A corporation's duty is to fill their charter. They aren't required to sacrifice everything for profit or even to be particularly good. I so hate this idiotic argument.

Re:$5 says they... (4, Insightful)

Anonymous Coward | more than 4 years ago | (#30148514)

No, it wouldn't be that obvious.

They will sell it to another DNA testing company, who happens to be owned by a V.C. fund, who are chaired by former Health Industry Executives, who are backed by a Health Insurance Company. Layers man, layers. Less scrutiny that way.

Re:$5 says they... (1)

Captain Splendid (673276) | more than 4 years ago | (#30148518)

Hey, if it's good enough for libertarians, it's good enough for all of us!

Re:$5 says they... (1)

jhoegl (638955) | more than 4 years ago | (#30148722)

Interesting view point, as this would be more of a capitalistic endeavor instead of a governmental one. Perhaps you are confused.

Re:$5 says they... (4, Funny)

commodore64_love (1445365) | more than 4 years ago | (#30149064)

Well.

At least if the DNA data was given to the government we know it would be safe and never used for nefarious purposes.

.

hahahahahahahaahahahahahaha!
L8r

Re:$5 says they... (1)

PopeRatzo (965947) | more than 4 years ago | (#30150160)

At least if the DNA data was given to the government we know it would be safe and never used for nefarious purposes.

Perhaps you can describe a scenario where DNA data in the hands of the government would be more dangerous than that same information in the hands of corporations.

Let's see...the government has personal data on all citizens, and has had such information for many decades, yet few of us would give that same information out to any company that asked for it. There's a reason for that.

Re:$5 says they... (1)

theaveng (1243528) | more than 4 years ago | (#30151720)

Read this book: When History Is a Nightmare: Lives and Memories of Ethnic Cleansing in Bosnia-Herzegovina, Europe. As evil as Microsoft, Comcast, and other corporations may be, at least they don't have the power to imprison or kill people for carrying the wrong DNA (like governments have done time-and-time-and-time again).

Re:$5 says they... (1)

Artraze (600366) | more than 4 years ago | (#30149104)

As someone who leans libertarian on some things, I don't really agree that this is so terrible. Honestly, is it fair or reasonable that an _insurance_ company cover the expenses of something that is guaranteed to happen? Shouldn't they adjust their rates based on you genetic predisposition to something, the same way that, for example, car insurance does for bad drivers?

If we decide, as a society, that treating people with genetic diseases is beneficial to us, then we should directly support it, rather than hiding it from insurance companies so we can all (well, those with insurance) pay for it anyway.

(And yes, I would support this. I think that the principal problem with health insurance companies is that they don't provide insurance, but rather care, making this stuff a big issue when it doesn't have to be.)

Re:$5 says they... (3, Insightful)

NewWorldDan (899800) | more than 4 years ago | (#30148830)

Nope, can't do it. The data is an asset and it's still subject to whatever terms it was collected under. Just like the bank that wrote my mortgage may have gone bankrupt, but my payment and interest rate remain the same.

The data is also a medical record, and that comes with a whole slew of restrictions as well. In summary, the privacy implications are exactly the same as they were a year ago.

Re:$5 says they... (1)

Exception Duck (1524809) | more than 4 years ago | (#30149528)

Mod parent up, this is exactly the case.

Re:$5 says they... (0)

0100010001010011 (652467) | more than 4 years ago | (#30149588)

What good will that do in a socialist country like Iceland?

"Ah Ha! You have breast cancer in your family. You'll get the same free treatment as everyone else! Ah Ha!"

The Ministry of Health is responsible for the overall administration of health affairs and matters relating to health insurance.The health sector is regulated according to the Health Service Act of 2007 by which all inhabitants have right of access to the best possible health service at any given time for the protection of their mental, social and physical health. The main objectve of the Act on the Rights of Patients of 1997 is to ensure that there is no dicrimination against patients on grounds of gender, religion, beliefs, nationality, race, skin color, financial status, family relation or status in other respect.

The health service in Iceland is primarily financed by central government. Financing is mainly based on taxes or 85% and 15% is fee for service.

The country is divided into health care regions, each with their own primary health care centres, some of which are run jointly with the local community hospital. The primary health care centers have the responsibility for general treatment and care, examination, home nursing as well as preventive measures such as family planning, maternity care and child health care and school health care.

Hospitals in Iceland may be ranked as specialized teaching hospitals, general hospitals and community hospitals. Hospitalization is free of charge. The specialized hospitals perform most operations and procedures in all specialist medical fields. The health service is staffed by trained and qualified professional groups.

Life expectancy in Iceland (2003) is among the highest in the world. Average life expectancy at birth for females is 82,5 years and for males 78,7 years. Infant mortality is among the lowest in the world, 2,4 per 1000 live births.

Good Reading: http://www.euro.who.int/document/e82881.pdf [who.int]

Won't be sold, bills to be issued instead (0)

Anonymous Coward | more than 4 years ago | (#30149994)

They won't be selling the data, they will instead be sending each new "customer" a bill each month to cover the expenses these "customers" incur every time their body cells divide and infringe on the DCMA rights of the new owners of their genetic code.

Re:$5 says they... (0)

Anonymous Coward | more than 4 years ago | (#30152262)

The insurance companies have been shown as consistently instituting retroactive denial of coverage and other ethical lapses.
Given the chance to see someone's DNA and predict their health, the odds of them getting cancer or a heart attack would be a tremendous monetary benefit.
There is a movie along these same lines called "Gattaca" which gets into determining someones career based on their genetics.
http://www.imdb.com/title/tt0119177/?c=1

So why wouldn't an insurance company use this information because it is not illegal and it would save them money.

Time for an Amendment? (4, Insightful)

BobMcD (601576) | more than 4 years ago | (#30148412)

“This clearly introduces a layer of uncertainty beyond what people expected when they signed up,” she told the Times. “People do need to double check what they are signing up to. These companies often use broad consent, and I worry whether people know what their data might be used for in the long term.”

Personally I feel like your genetic information is always YOUR data. Call it a biological copyright if you wish. There's only one you, and you inherited the code used to make you.

This is as close to a modern inalienable right as I've yet seen.

Re:Time for an Amendment? (2, Interesting)

gedrin (1423917) | more than 4 years ago | (#30148576)

I wonder what the complexities would be around copyrighting your own DNA data. It seems fairly straightforward, as long as you don't want your data used for anything. However, I'm not sure it would be all that easy to take advantage of medical services if everyone had their own EULA for their info. I can't imagine a doctor would agree to signing a random EULA from Joe Normal, or want to pay for a lawyer to review such a document.

Also, do you have the rights at all? Could the partnership that originally created the data claim the rights to it that information or is there an implicit transference of ownership at the age of majority? ;)

Re:Time for an Amendment? (1)

MathiasRav (1210872) | more than 4 years ago | (#30148672)

Well, that would be combatted as easily as Facebook et al are using your pictures and data for whatever purposes they want. Their EULA specifies that you specifically grant them a non-exclusive, transferable, universal, yadda yadda license to use your DNA for whatever purpose they see fit. You give away the added value and retain the empty copyright container.

You don't get the doctor to sign your EULA, you sign theirs.

Re:Time for an Amendment? (1)

BobMcD (601576) | more than 4 years ago | (#30148752)

But if you can sign it away, then it is no longer inalienable.

Re:Time for an Amendment? (1)

gedrin (1423917) | more than 4 years ago | (#30149004)

You can sign away the right to a piece of property, transfering ownership, but still retain the right to decide what to do with your own property.

I think what is being proposed is a universal, irrevokable, ownership of one's DNA, both the physical and information aspects, and a contract that provides for limitted use rights for the duration and scope of the owner's consent.
I'm sure someone out ther is a lawyer and could better describe the specifics, but I believe that's the gist.

Re:Time for an Amendment? (1)

fulldecent (598482) | more than 4 years ago | (#30148976)

... and what would the restrictions be for "derivative works"?

Re:Time for an Amendment? (4, Insightful)

unitron (5733) | more than 4 years ago | (#30149114)

... and what would the restrictions be for "derivative works"?

You have to support them until they turn 18.

Re:Time for an Amendment? (1)

Ihmhi (1206036) | more than 4 years ago | (#30151470)

No, you don't [childwelfare.gov] .

Re:Time for an Amendment? (1)

unitron (5733) | more than 4 years ago | (#30153438)

WHOOOOOOOSHHHHHH!

Re:Time for an Amendment? (1)

gedrin (1423917) | more than 4 years ago | (#30150896)

I'm fairly sure that if a new partnership forms (G2), wherein each party has the rights to it's own content produced by their respective original partnerships (G1a and G1b), and they produce a G3, no party to any G1 would have more than a 25% share of the G3 content anyway. Also, there's good argument to say that the emergent properties in the G3 produced by G2 represent an original work by G2. It might depend on the legal standards set in regard to the relationship between the raw data contributed and produced work.

Still, I doubt anyone would wish to retain ownership over too many generations of their data. The resulting liability for data containing bugs, particularly if those bugs are knowingly reproduced, could have consequences.

Re:Time for an Amendment? (1)

Bakkster (1529253) | more than 4 years ago | (#30148696)

“This clearly introduces a layer of uncertainty beyond what people expected when they signed up,” she told the Times. “People do need to double check what they are signing up to. These companies often use broad consent, and I worry whether people know what their data might be used for in the long term.”

Personally I feel like your genetic information is always YOUR data. Call it a biological copyright if you wish. There's only one you, and you inherited the code used to make you.

It belongs to you and only you. And your maternal twin.

Re:Time for an Amendment? (1)

Alinabi (464689) | more than 4 years ago | (#30148842)

As opposed to what? Your paternal twin?

Re:Time for an Amendment? (5, Funny)

gnick (1211984) | more than 4 years ago | (#30148844)

I was under the impression that all twins were maternal twins. If I have a paternal twin, then dad must have had a wild night.

Perhaps you're thinking of identical twins as opposed to fraternal twins?

Sorry for the nit-pick. My head's just swimming around trying to figure out how to create paternal twins...

Re:Time for an Amendment? (2)

roguetrick (1147853) | more than 4 years ago | (#30149988)

Monozygotic and Dizygotic is a much better way to say it.

Re:Time for an Amendment? (1)

jc42 (318812) | more than 4 years ago | (#30150802)

There's only one you, and you inherited the code used to make you.

It belongs to you and only you. And your maternal twin.

Heh. I'll assume you meant fraternal twin.

A few years ago, I read a interesting article (which I probably can't find any more) that among other things calculated the probability that there were pairs of "unrelated" humans with identical DNA. From what was known of DNA variability in humans, they calculated that there were between roughly 100,000 and 1,000,000 such pairs of "pseudo-twins" in the world, born to different parents but having identical DNA.

If we could find them, they would usually turn out to be distant relatives, of course, with common grandparents N times removed. At least their ancestors would probably come from the same part(s) of the world. But in many cases, the common ancestors would be so remote that they couldn't be determined from existing birth records.

Even more years ago, I remember reading a novel in which two of the characters were "anti-twins", born from the same parents, but with no shared chromosomes. The probability of this is a lot higher than the above number. I'll leave the calculation as an exercise for the reader. ;-)

Re:Time for an Amendment? (0)

Anonymous Coward | more than 4 years ago | (#30148814)

I see a potential problem with that...

Everyone is constantly leaving their DNA out in the public domain... (Hair, dead skin, saliva, etc.)

And, without actually trying to clone using the DNA sample, how do you know whose DNA is whose?
(I found this DNA, but how do I determine who it belongs to so I can return it?)

Re:Time for an Amendment? (1)

darthflo (1095225) | more than 4 years ago | (#30149402)

Well, they're going to build a huge database crosslinking DNA samples and names and one day, you'll get a visit from a guy in a dump truck full of hair, dead skin and lots of bodily secretions returning all of your lost property onto your lawn. Heh. That'll teach those pesky kids to get off of it. Yeah.

Nonsense (0)

Anonymous Coward | more than 4 years ago | (#30150254)

Should your cells ever divide, you will be in violation of the DCMA unauthorized copy restrictions, without out first obtaining licensing approval.

Re:Time for an Amendment? (1)

Dan541 (1032000) | more than 4 years ago | (#30153876)

So sue for copyright infringement.

Love it... (2, Insightful)

jhoegl (638955) | more than 4 years ago | (#30148440)

Businesses are so concerned with making money they dont think ahead. In a previous job we got rid of a proprietary system because we moved to a new one. No one thought about all the old records during this transaction. Well, we had access the the DB, but it was coded in such a way that the fields were a jumble of crap and would have taken forever to pull apart to get the records. I asked the proprietary company if they had a way to dump the records to PDF for easy reading and storage. Nope... This company was in business for 7+ years and they had no way to mass export records? They developed a half assed way to get it done, and I had to come up with a solution for the slack they left. So, not only did my company not think of this before hand, neither did the proprietary company. It is no surprise this company did the same Why does no one even consider this as a possibility? Companies dont last forever, so why has no one even considered this? The people that have their DNA at the company are now subject to the whim of whatever happens because it is guaranteed their contracts do not state "if we go under, your data will be destroyed". Good game people, good game.

Typical Noveaux /. (0)

Anonymous Coward | more than 4 years ago | (#30148796)

Well, we had access the the DB, but it was coded in such a way that the fields were a jumble of crap and would have taken forever to pull apart to get the records.

Incompetent IT staff, check.

I asked the proprietary company if they had a way to dump the records to PDF for easy reading and storage.

"Help us migrate away from your software to a competitor. Please?" ...check.

Nope... This company was in business for 7+ years and they had no way to mass export records?

Failure to understand monopoly and the profit motive, check.

Re:Typical Noveaux /. (1)

jhoegl (638955) | more than 4 years ago | (#30148894)

I dont know or understand your reference nor do I get your response. Are you saying I was incompetent or they were? If you say I am, you havent seen their SQL fields... It was seriously an entire chart in one field with Java code and HTML code inside. I would have had to parse it all out where they already did. Uh.. reread what you quoted about the PDF dumps, the company had no idea what we were doing in the way I stated my question. You have the full picture, I approached it a different way to them. So, GG on assumption. Third point, the reasoning for the PDF dump was made clear to them in how I approached them with the situation. So again, GG on assumption. Troll elsewhere, you are terrible at it.

Re:Love it... (1)

jopsen (885607) | more than 4 years ago | (#30149048)

If I remember correctly laws about personal data directories are VERY strict in the EU... http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=CELEX:31995L0046:EN:HTML [europa.eu]

Re:Love it... (0)

Anonymous Coward | more than 4 years ago | (#30154458)

If I remember correctly laws about personal data directories are VERY strict in the EU...

http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=CELEX:31995L0046:EN:HTML [europa.eu]

Iceland is not in the EU (yet at least) But there was a special law written about this database which states that the data can not be moved out of Iceland.

Re:Love it... (1)

electrosoccertux (874415) | more than 4 years ago | (#30149278)

You think that's bad, just wait till you get a job in government.

Re:Love it... (2, Informative)

greed (112493) | more than 4 years ago | (#30150128)

The phrase you're looking for is "vendor lock-in". You can only access your files and your data with The Chosen And Approved Tools.

And, frankly, once your company was on the annual maintenance bus, there's no way the vendor would want to provide extra features, like generic export... they know you're screwed if you try to leave.

Occasionally, that tactic fails, and they lose a maintenance stream. But it usually works. Especially if the next software release has Magic Special Feature everyone at the client site wants. (Which will need all new servers, and upgraded workstations, and more SAN, and better networking, and when you finally get it deployed, you'll find out they lied right at your C?O's face. Again. And yet he's not held accountable for continuing to pay for their crap.)

Re:Love it... (1)

jc42 (318812) | more than 4 years ago | (#30151402)

In a previous job we got rid of a proprietary system because we moved to a new one. No one thought about all the old records during this transaction. Well, we had access the the DB, but it was coded in such a way that the fields were a jumble of crap and would have taken forever to pull apart to get the records. I asked the proprietary company if they had a way to dump the records to PDF for easy reading and storage. Nope... This company was in business for 7+ years and they had no way to mass export records?

Of course. The vendors do that all the time, to lock customers into their products. It's no accident at all.

I've worked on several projects like this. Cracking the data using printouts (billing, customer notices, etc.) messy, ad-hoc coding. But if a company wants to pay the sort of hackers who know how to do it (naming no names ;-), you can usually get almost all the data out this way.

One funny thing I've found is that after a short time, the DB experts - even the ones being paid by IBM or Microsoft - are usually rather friendly, and cooperate in finding ways to get the data out in some readable format. I think it's because people who work a lot at customer sites end up being very sympathetic with the customers' problems, and don't have a lot of respect for the tricks their employers have used against the customers. But that's just my experience; others may have found a lot less cooperation.

I've usually felt relief when those jobs became "previous jobs". ;-)

The laws are in place. (0, Redundant)

HNS-I (1119771) | more than 4 years ago | (#30148442)

If you can't sell, destroy the data, if you can sell the business should continue it's privacy policy. By law we can(/should) be able to trust that the next owner does not use the data for malicious practices; even if the stakeholder would be a health insurance company.

Re:The laws are in place. (1)

s73v3r (963317) | more than 4 years ago | (#30149490)

The original firm should have to contact all the customers who's DNA they have, tell them what's going on, and give them the option to either have the data destroyed, or left alone under the same privacy policy once the new company comes in.

Anonymized data worth anything? (0)

WarJolt (990309) | more than 4 years ago | (#30148458)

But privacy advocates are concerned that Saga, whose primary interest is bottom-line profits, will opt to sell subscriber data — possibly in an anonymized form to researchers and pharmaceutical companies. Academic researchers have shown that anonymized data can be correlated with other data to identify people.

Once anonymized DNA data would become next to worthless. Hopefully there is a good privacy policy.

Re:Anonymized data worth anything? (1)

Sarten-X (1102295) | more than 4 years ago | (#30148638)

Trends can be pulled out from anonymized data fairly easily, and with a surprising degree of accuracy. From TFA:

Academic researchers have shown that anonymized data can be correlated with other data to identify people.

With the sheer amount of data contained in a DNA sample, even a partial sample would be enough to compromise an individual's identity. With enough information, practically any other piece of information can be obtained.

Re:Anonymized data worth anything? (1)

AndersOSU (873247) | more than 4 years ago | (#30148986)

I'm no expert in the field of datamining, but while academics have demonstrated that anonymized web searches can be correlated with other data to identify people, can the same be said for DNA data? I'd think you'd need minimum a close relatives name and genetic info already.

Once anonymized DNA data would become next to worthless

Nah, x% of the the sample population is susceptible to breast cancer, along with the sample groups demographics is really valuable data without knowing the name of anyone.

I am not a number! oh wait, yes I am... (1)

Thud457 (234763) | more than 4 years ago | (#30149252)

Q: how does one annonymize DNA data?

Information wants to be free! (4, Funny)

MarkvW (1037596) | more than 4 years ago | (#30148464)

DNA information and it wants to be free--just like Hollywood movies, Britney Spears songs, and videogames! Let it be free!!

I can see the future now: The Pirate Bay of Cloning Data!!

As Alfred E. Newman once said: "What, me worry?"

Re:Information wants to be free! (2, Funny)

Bakkster (1529253) | more than 4 years ago | (#30148718)

DNA information and it wants to be free--just like Hollywood movies, Britney Spears songs, and videogames! Let it be free!!

Right, it's not like anyone spent money to develop your genetic code, unlike with artistic works. Well, maybe a bottle of wine facilitated the process.

Re:Information wants to be free! (4, Funny)

AndersOSU (873247) | more than 4 years ago | (#30149010)

spent money to develop your genetic code

that's a really clumsy way to call someone's mom a whore.

Re:Information wants to be free! (1)

stephanruby (542433) | more than 4 years ago | (#30151102)

DNA information and it wants to be free

Mine certainly wants to be. Do you have a sister by any chance?

privacy (4, Insightful)

wizardforce (1005805) | more than 4 years ago | (#30148472)

Customer data should be considered the property of the customer; the decision as to what happens to that data should be accountable to the owner of that data which would be the person who provided that data in the first place. The data should not be transferred to a third party without permission from the owner of that information.

Banks (1)

zippthorne (748122) | more than 4 years ago | (#30148648)

Yeah. It's like asking, "when a bank goes out of business, who gets the money in the accounts?"

Re:Banks (1)

jhoegl (638955) | more than 4 years ago | (#30148746)

No one, the government insures your monies up to 100k. That is if the bank is ensured by the FDIC, which each bank that is displays the logo at their branches.

Re:Banks (0)

Anonymous Coward | more than 4 years ago | (#30150542)

Technically it's 250K since the FDIC's insurance responsibilities were raised to 250K to prevent mass withdrawals from wealthier individuals.

Re:privacy (3, Informative)

ColdWetDog (752185) | more than 4 years ago | (#30148748)

From the DE code site:

The user owns their genetic data and therefore we do not keep the data locked from the user in the deCODEme website. Users are free to download the genotypes from the Genetic Scan, however, we urge them to ensure the security of the data once it is on their computer, e.g. by encrypting the data file.

So, it seems like the whole issue is moot unless the new owner wants to blast through a listed policy. A client's 'personal data' is somewhat more at risk:

User attributes, public or private, will be used by deCODE only to gather statistical aggregate information about the users of the deCODEme website. Such analysis may include, but is not limited to; counting the number of users grouped by age, or associating genetic variants with any of the self reported user attributes. In the process of presenting any such statistical information, deCODE will ensure that users identities are not exposed. deCODE may disclose your personal information only if we believe such action is necessary to: comply with the law or legal process served upon deCODE or to protect and defend the rights or property of deCODE in relation to your agreement with deCODEme. Except for the above, deCODE will under no circumstances provide any 3'rd party, including insurance companies, health management organizations, hospitals, and government agencies, access to any of your personal data or data derived from your samples, unless you grant us an explicit authorization in your privacy settings.

Not much see here, move along.

Re:privacy (0)

Anonymous Coward | more than 4 years ago | (#30151934)

deCODE may disclose your personal information only if we believe such action is necessary to: comply with the law or legal process served upon deCODE

So all the buyer has to do is to sue their newly acquired property and choose to settle?

Why retain the data? (2, Insightful)

failedlogic (627314) | more than 4 years ago | (#30148510)

I'm wondering what their data retention policy is. I'm not sure about most companies or industries but AFAIK most businesses, financial companies and law firms are obligated to keep records for 7 to 10 years. Some might keep longer. Now I can understand if these guys want to keep the info for 2 year, in case there's an unsatisfied customer who wants their money back (for example, had test done elsewhere and theirs is different). If the retention policy of this industry permits indefinite, then there should be laws to protect customers including not only retention but sharing of information and proper deletion of records.

Re:Why retain the data? (1)

sunwukong (412560) | more than 4 years ago | (#30149356)

It's not just legislation that affects data retention -- common law also determines policy as well.

For example, in dentistry, legislation says 10 years for x-rays, study models, etc. But past legal wrangling in the dental community means we're holding onto stuff for at least 15 years.

Noticeable lack of legalese in the paperwork (4, Interesting)

mosel-saar-ruwer (732341) | more than 4 years ago | (#30148520)

We sent off some DNA in our family last winter, and I was surprised at the lack of legalese in the paperwork.

In particular, nowhere in any of it did it state that we were surrendering any property rights [i.e. the documents addressed neither the physical property of the biological material, nor the intellectual property of the DNA code].

On the other hand, because of the lack of legalese in the paperwork, it also didn't say that the DNA facilities were surrendering any property rights [or the ability to assert property rights in the future], either.

But I'd be shocked if the courts ruled for the creditors rather than for the "patients", unless there was some very explicit contracts in which the "patients" surrendered their property rights [although, even there, I wouldn't be surprised if a court ruled that such a contract were invalid, on e.g. 13th Amendment [constitution.org] grounds].

Re:Noticeable lack of legalese in the paperwork (3, Insightful)

afed125 (1681340) | more than 4 years ago | (#30148596)

They probably didn't want to touch it in the paperwork, because if they came up with some sellable innovation based on your genes, they'd probably have to show they compensated you somehow for your genes to have a valid contract (mutual benefit being a part of contract law usually), and so if you saw that kind of language in the paperwork, you'd wonder why THEY weren't paying YOU to send them your DNA.

I think I just found them listed on ebay. (1)

Schickeneder (1454639) | more than 4 years ago | (#30148572)

Seriously, that's a good way to make easy money. Auction off your genome!

Not just deCODE (3, Interesting)

cyber-dragon.net (899244) | more than 4 years ago | (#30148882)

23andMe, a US company who has been collecting samples for two-three years now has had two rounds of layoffs in the last six months, the second of which was a third of the company. I think this should be a real concern for the customers of any of these companies, Navigenics, Pathways, deCODE, 23andMe etc.

Re:Not just deCODE (1)

maxume (22995) | more than 4 years ago | (#30149062)

Any decent privacy agreement should survive the transfer of the information, they only have to be concerned if they signed a really bad contract.

The real question is... (0)

Anonymous Coward | more than 4 years ago | (#30149008)

Who gets the "deposits" when the sperm bank goes bankrupt.

I used to work for these guys (1, Funny)

stormcoder (564750) | more than 4 years ago | (#30149040)

It was interesting work but the management were clueless about software development. That's another company on my resume that no longer exists. Damn.

Re:I used to work for these guys (1, Funny)

Anonymous Coward | more than 4 years ago | (#30149332)

The final proof that you are irreplaceable. I would put it on my C.V.

When Google Goes Bankrupt, Who Gets Your Data? (0)

Anonymous Coward | more than 4 years ago | (#30149050)

Think about it.

Yours In Yasnogorsk,
Kilgore Trout

Copyright (0)

Doc Ruby (173196) | more than 4 years ago | (#30149190)

Copyright should protect everyone from any copying of their DNA except as expressly permitted by the person, other than ordered by a court after due process.

If the US government protected our personal data, including our most personal data: our DNA, nearly as vigorously as it protects the most expendible commercial copyrights, we'd all be a lot safer.

A simple question (0)

thewiz (24994) | more than 4 years ago | (#30149224)

...including Dorrit Mousaieff, Iceland's first lady.

If she's Icelands first lady, how did Icelanders procreate before she came along?

Re:A simple question (2, Funny)

flyingfsck (986395) | more than 4 years ago | (#30149582)

How? Mitosis of course...

Re:A simple question (1)

bytta (904762) | more than 4 years ago | (#30154182)

...including Dorrit Mousaieff, Iceland's first lady.

If she's Icelands first lady, how did Icelanders procreate before she came along?

Ladies don't procreate all that much. Sluts do...

The Stonecutters, of course! (0, Troll)

Foobar of Borg (690622) | more than 4 years ago | (#30149418)

Who keeps the DNA database?
We do!
We do!

IMHO The data should be destroyed (1)

gobbligook (465653) | more than 4 years ago | (#30149476)

IMHO you should only be able to sell a copy or "license" to use your DNA sequence, but that "license" should not be transferable to the next buyer.

Its odd that people blindly accept contracts without reading them or negotiating the terms. When submitting data like this to a database held by a third party, you'd better make damn sure there are stipulations in the contract to protect YOUR data! otherwise DON'T DO IT.

One more thing, if you give anyone any iota of information, expect that information to never again be private.

Decode went banktrupt (2, Insightful)

Exception Duck (1524809) | more than 4 years ago | (#30149484)

But the company called Íslensk Erfðargreining is still running as before - and nothing has changed with their contracts between them and their donators or the government.

I have no reason why we should distrust the new owners of the company any less then the previous ones.

Re:Decode went banktrupt (1)

Mr. Gunn (1205446) | more than 4 years ago | (#30149654)

Methinks this is a very important piece of information you mention, in danger of being overlooked.

A ghost from authors past... (0)

Anonymous Coward | more than 4 years ago | (#30149806)

I can hear Michael Crichton turning in his grave and shouting: "Next!"

Raising BS Concerns (4, Insightful)

DynaSoar (714234) | more than 4 years ago | (#30149996)

" raising privacy concerns " is a ubiquitous trigger cliche tossed out by people who want to inflame and enrage. It is as hollow as 'raising awareness' because neither are things that are raised, they are things you become, or become more so.

In this case, the persons or agents raising 'concern' are Wired and Times, who just might want readers so they can get ad money, and a lawyer that specializes in genomics, who just might want to attract clients for a law suit from which he'll collect big time (despite the fact that the as yet imaginary court battle would be over IP and privacy, neither of which are related to genomics). Oh, and a spokescritter from a group dedicated to watching tech and waving their arms, calling out 'Danger, Will Robinson' any time they can pretend something technological might be involved in anything that they can yell about and hope those who notice will join up and pay dues -- oh yes, so they can collect some cash too.

TFA states specifically who has the data and what they can and cannot do with it. In purchasing the assets of DeCODE, Saga is bound by law to protect the data. Despite this clear statement, the writers see fit to have "privacy advocates", that is, people who appoint themselves to speak on others' behalf without asking them, be 'concerned' that Saga will do this anyway.

In other words, the only people for whom this is an issue have a vested (ie. financial) interest in there being an issue, many of which have no relationship or arrangement with the persons whose data in involved in this imaginary 'concern' beyond their imaginary right to speak for those individuals.

I call BS on the bunch of them. There's not a single DeCODE client among them*. The only person interviewed who is actually involved is the CEO of DeCODE, who knows what needs to be done and is doing it. Not even Iceland's first lady is concerned, and wouldn't even be involved in this imaginary issue if it weren't for the fact that the Wired writer knew her premise was weak without an actual imaginary victim, so she dug until she found someone who was a client and tossed her name out in close proximity to concocted claims about privacy and such in order to lend the color of legitimacy to an otherwise transparent FUD spew.

Nothing happens (3, Insightful)

dabbigj (1265774) | more than 4 years ago | (#30150136)

Íslensk Erfðagreining wich is the company that handles everything concerning the data and the research can not by law hand over the data to a second company. Decode is the parent company of Íslensk Erfðagreining. A little bit of research would have gotten you the knowledge that they can only use the private and medical information that they have gotten in research purposes and can never hand it over. This article just smells like fud to me.

The Copyright Holder (0)

Anonymous Coward | more than 4 years ago | (#30151666)

Some deity, according to most of the people on the planet.

They're wrong, of course. Most of the people thought the world was flat. And they were wrong about that, too.

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