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Biotech Government Medicine

DNA Data From California Newborn Blood Samples Stored, Sold To 3rd Parties (cbslocal.com) 187

schwit1 writes: "This might come as a surprise to California natives in their 20s and early 30s: The state owns your DNA. Every year about four million newborns in the U.S. get a heel prick at birth, to screen for congenital disorders, that if found early enough, can save their life." However, when those tests are done, the leftover blood isn't simply thrown away. Instead, they're taken to an office building and the DNA data is stored in a database. "It’s a treasure trove of information about you, from the color of your eyes and hair to your pre-disposition to diseases like Alzheimer’s and cancer." And that's not the end of it: "The California Department of Public Health (CDPH) is not the only agency using the blood spots. Law enforcement can request them. Private companies can buy them to do research – without your consent."
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DNA Data From California Newborn Blood Samples Stored, Sold To 3rd Parties

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  • by Anonymous Coward on Tuesday November 10, 2015 @08:22PM (#50905571)

    Standard herd-management practice; stop disrespecting your owners.

    • Wow....

      Is there a way parents can refuse to allow this to their kid?

      • Re: (Score:3, Informative)

        by Anonymous Coward

        No there isn't. It's legitimized by law: https://www.govtrack.us/congress/bills/110/s1858

      • by BitterOak ( 537666 ) on Tuesday November 10, 2015 @08:40PM (#50905679)

        Wow....

        Is there a way parents can refuse to allow this to their kid?

        Yes. Don't have your baby in a hospital.

        • by Moof123 ( 1292134 ) on Tuesday November 10, 2015 @08:47PM (#50905721)

          In my 30's? Check.
          Born in Cali? Check.
          Born at home? Check! I escaped this one thanks to the awful experience my parents had at the hospital with my brother.

          Interestingly, back then the state could really make you jump through hoops for doing this. My birth certificate got held up for 4 months to try to force my parents to divulge the midwife's name (midwifery was and may still be illegal in the People's Republic of California).

          • by KGIII ( 973947 )

            I've an ex who is a midwife and is from California. Up in the Grass Valley area. Don't worry, she's too young to have been your mother's baby catcher.

          • by stephanruby ( 542433 ) on Tuesday November 10, 2015 @09:29PM (#50905947)

            In my 30's? Check.
            Born in Cali? Check.
            Born at home? Check! I escaped this one thanks to the awful experience my parents had at the hospital with my brother.

            You didn't escape anything.

            If they have your brother's dna on file, then they're just one brother away from identifying your dna.

        • We had our daughter at home with a midwife, and she required that we get the blood screening done. I had no idea her DNA could be in a database from that somewhere, and I never signed anything to authorize that sort of thing. The screening was performed at a LabCorp office.
          • We had our daughter at home with a midwife, and she required that we get the blood screening done. I had no idea her DNA could be in a database from that somewhere, and I never signed anything to authorize that sort of thing. The screening was performed at a LabCorp office.

            The midwife requires this as a condition for delivering your baby? The problem is, by the time you're supposed to take your baby in for that screening, she has already delivered the baby! So what happens if you just don't bring the baby in?

          • by pnutjam ( 523990 )
            I've never had a baby in California, but I've had six in other states. In my experience, you get very little information about what is going on with your baby, especially if you put them in the nursery.
            Every doctor wandering the halls can stop by and do whatever checks they want, then bill you for the visit. The medical community has some great ethical guidelines, but they are often overlooked or ignored.
        • by jdavidb ( 449077 )
          Most of our children have been born at home, but we still had to do the heel prick tests (in Texas). I think there was a way to opt out of them storing the blood samples, but I don't trust them to actually do that.
  • by Anonymous Coward

    We wont use it for anything else they said.
    The government is just looking out for you they said.
    The people who do this shit should be lined up and shot.

    • Actually they did not. They never promised anything - they never mentioned it. The basic problem is you are paranoid about the wrong things. You think the government will lie and not do what they promise. Instead they simply don't mention what they are doing.

      Here, let me correct your libertarian rant:

      (They don't ask what we are doing with this blood?) (If they don't pay attention, and don't pass a law against it, we can do what we want.) (We can tell them it's small government simply by selling it

      • Actually it gets worse than that.

        They go we need to take these samples to test for this stuff. hmm doing the tests is (expensive, hard, ,etc) we should contract it out. The contract company goes, we got all this stuff, how do we monetize it even farther, as the government is making us do these tests on razor margins. oh we can sell the raw data to company Z. excellent we can get paid double or triple for the same product.

        eventually it gets found out and things like this happen.

        The government doesn't hav

  • Sue - Sue - Sue! (Score:5, Insightful)

    by Mitreya ( 579078 ) <mitreya&gmail,com> on Tuesday November 10, 2015 @08:29PM (#50905613)
    I don't think this

    Law enforcement can request them. Private companies can buy them to do research - without your consent.

    neccesarily means that

    The state owns your DNA.

    Surely it should be possible to establish that individuals own their DNA, particularly from the perspective of private companies that may want to buy them from the state. Lawsuit time?

    • Read the Michael Crichton novel "Next". It tells a (fictional) story about bad actors "owning" the DNA of someone. I believe it is rooted in truth (most of Crichton's novels are moralistic and focused on some social or technical issue), and the gist is that a company "owned" a person's DNA because tissue removed from his body became the legal property of the hospital where it was removed (in the papers he signed prior to surgery). I may have not gotten this exactly correct (been a while since I read it),

    • by AmiMoJo ( 196126 )

      I imagine they would claim to own the sample and the decoded data. I'm no expert on US law but I seem to recall that it was ruled that statistical information could not be protected by copyright (baseball match results I think it was), so maybe you can't really own your DNA "data" either.

      It's like a book containing out of copyright songs. The songs can't be copyrighted, but the layout of the musical notation and the book can be. Same with maps, the lay of the land can't be owned, but the map of it can be.

      Ar

  • These people are like modern day vampires, they want to suck you dry.

  • by swell ( 195815 ) <jabberwock&poetic,com> on Tuesday November 10, 2015 @08:30PM (#50905621)

    No doubt they can patent anything interesting that they find in your blood.
    You won't be the first whose DNA made millions for other people.

  • Surely doctors have a duty of care to their patients that would include preventing this happening? Seems to me that a rather large class action suit might be out there soon...
    • If they are doing this, there has to be a legal release form buried somewhere in the paperwork that people sign on admittance. There is no way a good medical lawyer would let this occur in a hospital that they were paid to represent, because of the possibility that people find out ten years later and crater the hospital with a class action lawsuit.

      Of course, any pregnant woman admitted under emergency circumstances might not have had a chance to sign the papers before it is done..it seems that if this is
      • by Anonymous Coward

        No release needed as HIPPA [hhs.gov] explicitly allows a variety of government agencies to access your health data. Here's one(of twelve) exceptions:

        A covered entity also may use or disclose, without an individuals’ authorization, a limited data set of protected health information for research purposes (see discussion below).

        • And elsewhere in the documented "Limited" is defined as meaning "all"

        • Remember when HIPPA was sold as being about privacy? What it really does is introduce a series of bureaucratic hoops which make it more difficult to do anything medically than it ever was before, while giving government and its corporate sponsors access to any of your personal information they want, and for free.

      • It is considered a standard part of every birth actually so it is just like authorizing the doctor to make sure you don't bleed to death and your child is infused with blood should they need it (and many do). Most states have this program so that is the justification for it being a standard part of giving birth. It is an opt out program because most people would not believe they need testing (genetic diseases are by definition rare), however the consequences are so damn severe for anyone with a disease tha
  • by WillAffleckUW ( 858324 ) on Tuesday November 10, 2015 @08:34PM (#50905647) Homepage Journal

    DNA is Data.

    The EU/US Data Treaty and the US/Canada Data Treaty both give citizens of those countries, even if born in the US, data privacy.

    I smell class action lawsuits.

    • by Anonymous Coward

      Data privacy? You haven't visited Slashdot much have you? There are almost daily stories about accidental (hacks) or intentional data breaches (Spying on citizens). The only way to make sure your data is private is to NOT store it in the first place!

      • There is however a fundamental difference between we didn't secure your social security number well enough and it was taken by a third party and we will sell your social security number to anyone interested in "research."
    • Re: (Score:3, Interesting)

      We do not test people who are not residents of California. I have one sample from outside our program and we still don't know what to do with it since there is no data attached and we have no authority to destroy it.
  • I got out of Kali longer before the kids came.
  • by vistic ( 556838 ) on Tuesday November 10, 2015 @08:45PM (#50905703)

    If the DNA information is just collected and stored anonymously, with no record of WHOSE DNA it is, I don't think it's a problem. It's useful for compiling statistics and doing studies. However, if law enforcement is interested in this data, it sounds like they are actually keeping track of who the DNA sample came from. Just make it anonymous.

    • by Anonymous Coward

      It's definitely not ananymous. In CA, upon arrest they also swab your mouth. Plus, I doubt hospitals would then now refuse to sell said same data. Ahh, baby's blood. Yummy

      • It is certainly linked to your parents. But it cannot be used beyond a reasonable doubt for forensics. The samples will be too old and there isn't a good mechanism for the DoJ to request samples. They are used ideally for identifying remains of missing persons, I don't deal with that though. For reference I do the human identity testing of the samples (to test in case of a mix up). The DOJ lab is across town (Richmond, CA) and they have a tremendous backlog of those swabs.
    • by Intron ( 870560 )

      If the DNA information is just collected and stored anonymously, with no record of WHOSE DNA it is, I don't think it's a problem. It's useful for compiling statistics and doing studies. However, if law enforcement is interested in this data, it sounds like they are actually keeping track of who the DNA sample came from. Just make it anonymous.

      That would make it useless to the insurance companies who want to buy it and deny you coverage.

      • by AHuxley ( 892839 )
        Re 'if law enforcement is interested in this data"
        Yes the many years of public information on Familial DNA searching been a term used in public.
        https://en.wikipedia.org/wiki/... [wikipedia.org]
        Seems many nations will have paperwork going back to "1983" too :)
    • If the DNA information is just collected and stored anonymously, with no record of WHOSE DNA it is, I don't think it's a problem. It's useful for compiling statistics and doing studies. However, if law enforcement is interested in this data, it sounds like they are actually keeping track of who the DNA sample came from. Just make it anonymous.

      According to an expert who was interviewed for the article (forgive me for RTFA), it is not difficult to deanonymize this sort of DNA data. Supposedly a layman could do it with proper training and that it is trivial for a DNA expert.

    • > If the DNA information is just collected and stored anonymously, with no record of WHOSE DNA it is,

      In which case it would be useless for most of the most valuable and, yes, profitable research and would not be funded.

    • by rgmoore ( 133276 )

      The problem with anonymizing the samples completely is that it makes it impossible to add new information about the donors' health since birth, which would make the samples much more useful for researchers. Totally anonymous samples could be used, for example, to look at gene frequencies, but not a lot more. The greatest value to researchers would be if they could associate the samples with subsequent health information so that they could look for genetic markers associated with specific diseases. That c

    • If the DNA information is just collected and stored anonymously, with no record of WHOSE DNA it is, I don't think it's a problem. It's useful for compiling statistics and doing studies. However, if law enforcement is interested in this data, it sounds like they are actually keeping track of who the DNA sample came from. Just make it anonymous.

      No - why should this be allowed at all? I don't care if it's anonymous or not - my DNA is mine and my baby's DNA is his/hers. It doesn't belong to the state and it sure as hell doesn't belong to any of these companies who are scarfing up DNA data and metadata.

      1) If there is no requirement to collect directly related to the health of the patient, then no collection should be made.
      2) Should not be collected without the approval of the parents.
      3) The parents should not be misled or obligated to give their a

    • The DNA, itself, can be personally identifiable. There is disagreement about exactly how much or what sequences you would have to include for DNA data to be personal health information (PHI, regulated by HIPAA) in and of itself. One thing is perfectly clear - that any sequence which includes forensic DNA markers (specifically mentioned as personally identifiable information in HIPAA) as well as the sequence of any gene which is the subject of an FDA approved diagnostic test, is PHI. There is no need for a
  • Since when has Slashdot posted articles without links to corroborate the story? This is a new low even for Slashdot.

  • {Citation needed}
  • It is really strange to be sitting around as a typical gov't employee reading ./ and finding my very own job mentioned. So yeah, we have all your blood, if you were born sometime around or after the mid eighties. We get roughly 500,000 samples a year, and the blood was until recently stored alongside Safeway's inventory at a local freezer facility. We also have to special order baby blood for our reference samples, we have the best catalogs. Now if you have any questions about this place, ask me, if I do
    • Now if you have any questions about this place, ask me, if I don't know, I can ask someone else. I am quitting for my Ph'D at the end of the year so you've got my time ./ as a thanks for giving me so much to read over the last six years.

      Ok, I'll bite. Thanks in advance for the info.

      1) Can you provide a link or links to more information about this program, since apparently the submitter or Slashdot editors thought that wasn't necessary?

      2) Is there a method or procedure to determine if your information is in this database, and to obtain this information?

      3) Is there a way to opt-out or otherwise control the flow of this data to/from other agencies?

      • Ok, my snark re: the editors may have been unwarranted -- I see the article's sources are now beside the headline. Not used to that.

        For anyone else, it's at http://sanfrancisco.cbslocal.c... [cbslocal.com]

      • 1) Sure, that would be great, I know nothing about the editing process so I will just post up links in this comment, thanks for dealing with it. Main Page: http://www.cdph.ca.gov/program... [ca.gov] 2) I know there is some way to look up your information, it is generally only easily accessible within 5 years of birth. Frankly, getting records for most of the readers here would be an annoying process on our end since those old records are somewhere outside of the central system (I've looked for my own). 3a) Opt-out
        • I'm late to this thread, but this seems like a good place to add one more key point that's important and likely lost on the causal crowd here.

          The DNA referenced here is just that: DNA in a blood sample. Except for the basic genotyping done looking for specific diseases (which looks at miniscule portion of the DNA), there's almost no data associated with these samples.

          To actually sequence the DNA from these samples would be a tremendous undertaking and be very expensive. For example, pre-natal sequencing fir

  • Surely there must be an interpretation of the DMCA whereby the originator of IP can prevent its misuse? Or does that apply only to corporations?
  • Finally - an advantage to being an old guy. All you young kids can worry about your DNA privacy AND get off my lawn!

    In all seriousness, privacy is being eroded from so many directions, if we (and by we I mean almost everyone) don't start fighting against it, we will discover that the War on Privacy is over, and we have lost. In fact, between Facebook, Google, ISPs and electronic health records, it's probably over already - but I want to be optimistic.

    • In all seriousness, privacy is being eroded from so many directions, if we (and by we I mean almost everyone) don't start fighting against it, we will discover that the War on Privacy is over

      Privacy-shmivacy, people care more about the War on Christmas. I guarantee there will be more statements from the current crop of candidates at the debate tonight on the War on Christmas than about the War on Privacy.

      I mean, what was Starbucks thinking when they brought out red cups? They're basically spitting in the

    • The privacy war will be over??? Old geezer, sit down. I have something to tell you and it's going to make you very very sad.
  • From TFA: "And CDPH says the blood spots are de-identified and can’t be tracked back to the child." I don't see the issue here. This helps with medical research.
    • de-identified for which acquirer? Just CDPH, how about government and law enforcement?

    • From TFA: "And CDPH says the blood spots are de-identified and can’t be tracked back to the child." I don't see the issue here. This helps with medical research.

      Also from TFA:

      But Yaniv Erlich with Columbia University and the New York Genome Center said there’s no way to guarantee that. His research demonstrated how easy it is to take anonymized DNA, cross-reference it with online data and connect it to a name. “You need to have some training in genetics, but once you have that kind of training the attack is not very complicated to conduct,” he said.

  • by Shadow of Eternity ( 795165 ) on Wednesday November 11, 2015 @12:03AM (#50906503)

    I do believe I have a right to be secure in my person, papers, etc against an unreasonable search or siezure...

    • I do believe I have a right to be secure in my person, papers, etc against an unreasonable search or siezure...

      That's probably with regard to the law officers; I think in this case it's more plain old theft.

    • I do believe I have a right to be secure in my person, papers, etc against an unreasonable search or seizure...

      How quaint. Show us your buckled shoes! Stick your foot thru the Freedom Cage (TM) bars.

  • Where's the warning label for this one then California?

  • DNA Data From California Newborn Blood Samples Stored, Sold To 3rd Parties

    Is the data identifiable? Meaning, can a donor be identified with a sample? That is the crux of the matter (and one the zealots in the interweebz seem keen to ignore.)

    Is the data identifiable, then?

    Yes: problem.

    No: no problem.

  • Texas did this for many years, but got called out for it when it became clear that there were some transactions with the US Navy, using the dried blood samples for research. They were sued and had to eventually destroy 5 million samples [texascivil...roject.org]

    An article in Pediatrics from 2011, hosted at the US National Institute of Health [nih.gov], says that many states are still doing similar shady things with newborn blood samples, and that some don't even need to inform parents about how the samples are used after the initial tes
  • No link to proof

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