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

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."

29 of 187 comments (clear)

  1. What's the complaint? by Anonymous Coward · · Score: 5, Insightful

    Standard herd-management practice; stop disrespecting your owners.

    1. Re:What's the complaint? by cayenne8 · · Score: 2
      Wow....

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

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    2. Re:What's the complaint? by Anonymous Coward · · Score: 3, Informative

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

    3. Re:What's the complaint? by BitterOak · · Score: 5, Informative

      Wow....

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

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

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    4. Re:What's the complaint? by Moof123 · · Score: 5, Interesting

      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).

    5. Re:What's the complaint? by stephanruby · · Score: 5, Insightful

      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.

    6. Re:What's the complaint? by BitterOak · · Score: 3, Insightful

      We still want a sample because

      You may want a sample. I want a beach house in Malibu. Luck to us all.

      we are mandated by law to screen every baby.

      You may be mandated by law to screen every baby, but that doesn't mean I am mandated by law to hand you my baby for screening.

      You can avoid this by refusing to have your child participate in the medical and legal systems... we won't mind.. less work.

      Please cite the law which says my child can never go to a doctor or hire a lawyer because he hasn't provided the state with a DNA sample.

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    7. Re:What's the complaint? by BitterOak · · Score: 2

      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?

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    8. Re:What's the complaint? by AmiMoJo · · Score: 3, Interesting

      One of the worst aspects of DNA databases is that they criminalize family members of people on the database.

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    9. Re:What's the complaint? by Dr.+Manhattan · · Score: 2

      You can also refuse vaccines. But why the hell would you do either of these things ? You can have your sample destroyed so any real objection is pretty flimsy.

      There's two separate things going on here. The screening for obscure diseases is one thing - and sure, that's a good thing. The warehousing of samples indefinitely to be used in research - and whatever else might one day be permitted legally - without explicit consent? That's quite a different issue, and there are reasonable objections to that.

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    10. Re:What's the complaint? by ultranova · · Score: 2

      One of the worst aspects of DNA databases is that they criminalize family members of people on the database.

      Worst? It means the state holds your family hostage for your good behaviour, and can pretend it's not their fault if called for it. Perhaps that is an unintended side effect. Perhaps.

      --

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  2. Sue - Sue - Sue! by Mitreya · · Score: 4, Insightful
    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?

    1. Re:Sue - Sue - Sue! by flatulus · · Score: 2

      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), but that was my takeaway.

      Good novel, too.
       

  3. and you don't own any discoveries . . . by swell · · Score: 4, Insightful

    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.

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    ...omphaloskepsis often...
    1. Re:and you don't own any discoveries . . . by mspohr · · Score: 4, Informative

      Henrietta Lacks.
      https://en.wikipedia.org/wiki/...

      Biotech made millions from her DNA. She got nothing.

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  4. Any child of an EU or Canadian citizen can sue by WillAffleckUW · · Score: 5, Interesting

    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.

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    1. Re:Any child of an EU or Canadian citizen can sue by DavidPoole · · 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.

  5. Finance ethics, lol! by TiggertheMad · · Score: 2

    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 true, someone is going to get sued for a lot of money over this.

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  6. Actually no by rsilvergun · · Score: 2

    they still can't patent discoveries. Now, synthetic DNA yes, you can patent that. But then you didn't discover that, you made it. Although the problem with that is at what point did you 'discover' it or just make something naturally occurring...

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  7. Only a problem if it's not anonymous by vistic · · Score: 2, Insightful

    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.

    1. Re:Only a problem if it's not anonymous by Intron · · Score: 2

      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.

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      Intron: the portion of DNA which expresses nothing useful.
    2. Re:Only a problem if it's not anonymous by AthanasiusKircher · · Score: 2

      Nice shit post. Obamacare introduced guaranteed issue (aka "no discrimination based on pre-existing conditions), so that's not a possibility anymore.

      No -- important correction: that's not a possibility CURRENTLY.

      The Republicans have been fighting for years to overturn Obamacare, and though it seems increasingly unlikely that they'll succeed in overturning the entire thing, it's certainly possible that they may eventually chip away at some provisions. This is one of the most expensive ones for insurance companies, so if they can lobby to gradually chip away at it piecemeal, you can bet that they'll try.

      No law is forever.

    3. Re: Only a problem if it's not anonymous by DavidPoole · · Score: 2

      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.

    4. Re:Only a problem if it's not anonymous by rgmoore · · Score: 2

      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 can only happen if it's possible to connect the samples to their donors' health records.

      The ideal approach would be to have a completely trustworthy organization hold the samples, associate them with the health records, and then anonymize the samples before providing them to researchers. That would let you have the benefits of the research without the drawbacks of destroying people's privacy. The question is whether we trust our government to do that.

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  8. Re:Was anybody suprised? by Anonymous Coward · · Score: 2, Insightful

    Eventually we will see a national DNA registry. Something like this will be how it starts.

    Actually, it started back in the late 90's with the D.A.R.E. program. Local law enforcement goes around to all the Grade Schools each year, and hands out a bunch of "Your children will be kidnapped and brutally raped, tortured, and killed unless..." literature. They use it to convince the parents to provide DNA (via mouth swabs), fingerprints, and photographs, and stuff it all into a "black" database. Which database is this? Well, it's the national LE database of course, where it lives forever.

  9. Samples are "de-identified" by greanleaf · · Score: 2

    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.

    1. Re:Samples are "de-identified" by jittles · · Score: 2

      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.

  10. DNA is part of my person isn't it? by Shadow+of+Eternity · · Score: 4, Insightful

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

    --
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  11. Hahahaha by ThatsNotPudding · · Score: 2

    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.