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When a DNA Testing Firm Goes Bankrupt, Who Gets the Data? 114

Posted by timothy
from the how-about-blue-cross-blue-shield dept.
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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When a DNA Testing Firm Goes Bankrupt, Who Gets the Data?

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  • by Anonymous Coward

    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.

    • by PopeRatzo (965947) *

      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 test

    • Re: (Score:3, Insightful)

      by jandersen (462034)

      Clearly, the answer is that any samples and documentation should be destroyed

      Clearly, you have overlooked the fact that we are talking about private companies here. What happens when a company goes bust? Another company buys it and its stock - in this case the DNA profiles etc. What did you expect? When you deal with private companies that is the way it is; which is why it would probably be better if it was handled by a public authority - they are after all somewhat accuntable to the public, and they don't go bankrupt so often.

  • by Anonymous Coward on Wednesday November 18, 2009 @04:44PM (#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.

    • by gedrin (1423917)
      Huh...Bill Gates just disables the ability to assimilate vaccinations on his.
    • by shentino (1139071)

      Good God...NO NO NO!

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

    • I licensed my DNA to my offspring, its closed-source with a limited distribution policy.
      • Re: (Score:3, Funny)

        by Anonymous Coward

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

      • by MarkvW (1037596)

        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?

        • by 49152 (690909)

          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: (Score:2, Insightful)

      by Anonymous Coward

      > 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...

    • 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.

      • by PachmanP (881352)

        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.

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

    • by ignavus (213578)

      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...

    • Re: (Score:1, Insightful)

      by Anonymous Coward

      Have you heard about the new DARPA project to clone you?

  • $5 says they... (Score:5, Insightful)

    by DomNF15 (1529309) on Wednesday November 18, 2009 @04:45PM (#30148362)
    sell the customer data to some health insurance company.
    • $5 says they... (Score:3, Insightful)

      by iammani (1392285)
      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!
      • by PopeRatzo (965947) *

        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 beli

      • Re:$5 says they... (Score:4, Interesting)

        by jc42 (318812) on Wednesday November 18, 2009 @07:21PM (#30150462) Homepage Journal

        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.

        • 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... (Score:4, Insightful)

      by Anonymous Coward on Wednesday November 18, 2009 @04:56PM (#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.

    • Hey, if it's good enough for libertarians, it's good enough for all of us!
      • by jhoegl (638955)
        Interesting view point, as this would be more of a capitalistic endeavor instead of a governmental one. Perhaps you are confused.
        • by commodore64_love (1445365) on Wednesday November 18, 2009 @05:39PM (#30149064) Journal

          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

          • by PopeRatzo (965947) *

            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.

            • by theaveng (1243528)

              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).

              • by PopeRatzo (965947) *

                I'm extremely well-informed about the history of the Baltics.

                You believe the government was responsible for the massacres in Bosnia-Herzegovina?

            • During the 1900s governments killed almost 100 million of their *own* citizens via eugenics, ethnic cleansing, gassing, and so on. How many citizens have insurance companies rounded-up and gassed/shot? Near-zero. So yeah I trust my insurance company more than I trust my government.

              • Re: (Score:2, Interesting)

                Of course the statistic on how many they allowed to die by refusing to pay out or by refusing to allow someone to get insurance in the first place is not available.
              • by PopeRatzo (965947) *

                During the 1900s governments killed almost 100 million of their *own* citizens

                The cigarette companies alone kill that many people in half the time, worldwide.

                When it comes to killing people, evil corporations not only do it better, but they get paid to do it as well.

                Governments are pikers by comparison.

      • by Artraze (600366)

        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 tha

        • by Todd Knarr (15451)

          Because that leads to a situation where it makes no sense to buy insurance: my premium's going to be my actual costs plus the insurance company's overhead and profit, and I'm better off putting the money into a safe, relatively-liquid investment and letting it earn interest until it's needed.

          The problem is that you're thinking of insurance as covering your costs, when insurance is supposed to be a risk pool. The chance of any one person dying of, say, cancer is really unpredictable, but when you look at a p

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

      by NewWorldDan (899800) <dan@gen-tracker.com> on Wednesday November 18, 2009 @05:19PM (#30148830) Homepage Journal

      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.

    • 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

  • by BobMcD (601576) on Wednesday November 18, 2009 @04:49PM (#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: (Score:2, Interesting)

      by gedrin (1423917)
      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
      • 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.

        • by BobMcD (601576)

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

          • by gedrin (1423917)
            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.
      • ... and what would the restrictions be for "derivative works"?

        • by unitron (5733) on Wednesday November 18, 2009 @05:45PM (#30149114) Homepage Journal

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

          You have to support them until they turn 18.

        • by gedrin (1423917)
          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 pr
      • by stupid_is (716292)
        Ask these students [acfnewsource.org]. There are other folks who've done it more "officially", but my Google-fu is weak today, and pretty much any search on "copyright" usually trawls up RIAA/MPAA links
    • by Bakkster (1529253)

      “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.

      • by Alinabi (464689)
        As opposed to what? Your paternal twin?
      • by gnick (1211984) on Wednesday November 18, 2009 @05:20PM (#30148844) Homepage

        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...

      • by jc42 (318812)

        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-twin

    • by Dan541 (1032000)

      So sue for copyright infringement.

  • Love it... (Score:2, Insightful)

    by jhoegl (638955)
    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 comp
    • by jopsen (885607)
      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]
    • You think that's bad, just wait till you get a job in government.

    • Re: (Score:2, Informative)

      by greed (112493)

      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 c

      • by arethuza (737069)
        I once worked on a project that had to integrate with an existing commercial application - this was in an insurance company and the application was their core policy management system. We had a look at the database schema for the application and it looks pretty sensible, all we wanted to do was read some data from the tables so the technical risk was pretty low. However, turns out that the vendor had a clause in their contract that stopped the client from directly accessing "their" database schema - this wa
    • by jc42 (318812)

      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 record

  • 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.

    • by Sarten-X (1102295)

      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.

    • by AndersOSU (873247)

      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.

    • Q: how does one annonymize DNA data?
  • by MarkvW (1037596) on Wednesday November 18, 2009 @04:53PM (#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?"

  • privacy (Score:5, Insightful)

    by wizardforce (1005805) on Wednesday November 18, 2009 @04:53PM (#30148472) Journal

    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.

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

      • by jhoegl (638955)
        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.
      • by arethuza (737069)
        That's easy - the crooks who used to run the bank get to keep as much as they want.
    • Re:privacy (Score:4, Informative)

      by ColdWetDog (752185) on Wednesday November 18, 2009 @05:13PM (#30148748) Homepage
      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.

      • by gstoddart (321705)

        So, it seems like the whole issue is moot unless the new owner wants to blast through a listed policy.

        I agree with you in principal -- it should already be precluded.

        But, if web-sites can retro-actively change their privacy policy, is there strong enough protection from existing laws to prevent the new owner from simply saying "these are our new terms" and doing it anyway? My guess is it's a sufficiently gray area that by the time you got a court to rule on it, it would simply be too damned late.

        Heck, give

  • by failedlogic (627314) on Wednesday November 18, 2009 @04:56PM (#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.

    • by sunwukong (412560)

      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.

      • by arethuza (737069)
        The contract that tests are done under usually also specifiies the retention policy - sometimes you have to be very careful to keep test records for X period of time and then destroy them after that time.
  • by mosel-saar-ruwer (732341) on Wednesday November 18, 2009 @04:56PM (#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: (Score:3, Insightful)

      by afed125 (1681340)
      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.
  • Seriously, that's a good way to make easy money. Auction off your genome!

  • Not just deCODE (Score:4, Interesting)

    by cyber-dragon.net (899244) on Wednesday November 18, 2009 @05:24PM (#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.

    • by maxume (22995)

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

  • 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: (Score:1, Funny)

      by Anonymous Coward

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

  • 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.

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

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

    • Re: (Score:3, Funny)

      by flyingfsck (986395)
      How? Mitosis of course...
    • by bytta (904762)

      ...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...

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

  • by Exception Duck (1524809) on Wednesday November 18, 2009 @06:14PM (#30149484) Homepage Journal

    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.

    • by Mr. Gunn (1205446)
      Methinks this is a very important piece of information you mention, in danger of being overlooked.
  • by DynaSoar (714234) on Wednesday November 18, 2009 @06:47PM (#30149996) Journal

    " 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 (Score:3, Insightful)

    by dabbigj (1265774) on Wednesday November 18, 2009 @06:55PM (#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.

"I have more information in one place than anybody in the world." -- Jerry Pournelle, an absurd notion, apparently about the BIX BBS

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