Creepy Government Database Watch

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CNN reports has a story on parents who are fighting state efforts to keep newborn DNA on file after the child is tested for genetic defects.

The genetic tests are done without the parents' consent, and some states then keep the DNA profiles for years. State laws vary on length of time the samples are kept, from just a few days in many states; to Indiana and New Jersey's oddly specific 23-year cutoff; to California and Florida, which keep the DNA "indefinitely."

States also vary on whether the newborns' names are attached to the samples, and the procedures by which the DNA profiles are loaned out to academic researchers.

NEXT: The Presidential Commission on Birth, Death, and the Meaning of Life

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  1. States also vary on whether the newborns’ names are attached to the samples, and the procedures by which the DNA profiles are loaned out to academic researchers.

    Does anyone believe that, if they exist, they won’t also be “loaned out” to cops and DAs?

    Didn’t think so.

    1. I figured that was precisely the purpose of keeping them on file. So if you’re pregnant in CA, better hop across the border to Nevada when your water breaks. That way your child’s genes won’t be used against him without prior consent, and as a bonus, dad can slip off to the craps tables during labor.

      1. Won’t matter. My state had a cut off date up until 2009 when it was changed to indefinitely. Not sure if the samples on file at the time were grandfathered in (I wouldn’t be surprised though)

  2. If the kids don’t do anything wrong…

    1. Seriously, just what are these babies hiding? The State is right to be suspicious now.

  3. all your babies are belong to us

    1. Somebody set up us the database!

  4. Holy shit. We did NT scans on our baby girl (who approaches three). In Florida.

    Now this really pisses me off to no end!

  5. Here in California they have the gall to charge you for this 4th Amendment-violating procedure.

    1. It isn’t a search unless one of those SCOTUS douchebags says it is a search.

      1. I think you have that backwards.

        It’s what government says it is, until SCOTUS says otherwise.

    2. Ever see Terry Gilliam’s “Brazil?”

  6. They’ll just pick out the best ones and use them to build a clone army.

  7. What, no implants?

  8. Whoa whoa whoa! They take the samples without parental consent? Goddammit. I was having a good day. Radley Balko is a dick.

    1. I don’t mean it, Radley. I’m so grateful for what you do; I just need to stop reading your articles if I want to retain my sanity.

    2. Some things you can consent to (if anyone remembers to ask you) like declining the eye antibiotics that are unnecessary if the mother doesn’t have STDs and such. But since this test is state-mandated, you don’t have the option to opt out as far as I know. Here in IL there have been more than a couple cases where parents end up the subject of a DCFS investigation because they refused the screening.

  9. I am involved in the Newborn Screening program in my state. We keep the cards for 90 days. They are then burned. The reason we keep the cards for 90 days is that occasionally the newborn screening studies must be repeated. Usually there is enough blood on the card to repeat it without having to stick the baby again.

    There are some tests were specific DNA probes are used to confirm the findings of the chemical tests done (Cystic Fibrosis and hemoglobinopathies).

    In my state, we don’t keep DNA, and the only time DNA tests are used at all is to confirm the original findings, then the test material is destroyed.

    We do have one out for research. IF a researcher can justify the public health need for the cards to our secretary of health, and can obtain written informed consent from the parents of the children involved, then the cards can be saved for research and then burned after.

    There is one out for clinical use. If the baby’s doctor needs the card to be kept for more than 90 days for testing (ie congenital deafness testing), then it can be retrieved from the lab prior to burning and sent to the parents.

    Not every state keeps the DNA, not every state keeps the cards. We don’t.

    1. Fuck You

      1. Leave my alma mater out of this.

    2. And none of the DNA information is entered into a database?

    3. Because, obviously, it would be impossible to get another DNA sample from the baby later, if deemed necessary by the parents.

  10. There is usually some regulation that keeps these separate from criminal databases however some reactionary (ie nancy grace et al) who in 10 or 20 yrs will point out that a raper could have been stopped “IF ONLY WE HAD ACCESS TO THAT DNA DATA BASE THAT HAS EVERY PERSON ON IT!” then its a simple stoke of the pen and we’re done… So long freedom, oh, and sorry great grandkids you’re right we sucked…

    1. Slight thread drift:

      One of the things that REALLY bugs me in the TV cop dramas is the number of times the “if we had access to this database we could stop this serial childkillerrapist but it’s illegal” meme is used. Of course, the clever CI finds a way to circumvent (or outright break) the law and solves the case, preventing another murder at the last possible second.

      Agitprop for das statpolizei.

      1. I wouldn’t mind so much, if the protagonists were ever allowed to be the bad guys: to have overstepped the bounds and been wrong. The kind of wrong that can never be made right and can never be washed out of your soul wrong.

        Somehow, every time the “good guys” do bad things from good intentions it all works out in the end.

  11. It is another in the whole pile of birth-related loss of individual rights. Many (all?) states mandate this test, which can’t be done until at least 24 hours. So if you want to leave the hospital early (as I always do – if I’m feeling fine I see no reason to have to stay somewhere with uncomfortable beds and crappy food and invasive nurses), you have to go back to the hospital between 1 and 7 days later to get this state mandated test plus the hospital gives you a lot of crap for leaving early because “omg but the test!”

    It’s relatively low on the list for me of stuff to be pissed about (things like court-ordered cesareans and lack of informed consent for routine hospital procedures are a lot more upsetting to me) but it is still really irritating that it is mandated at all – then the whole unconsented-to research database is a whole new level of shadiness.

    1. So that’s why they wouldn’t let me leave until 24 hours after my son was born. Hell, if I had known they were saving his DNA, I would have had him at home, hospital be damned.

      1. Yes, homebirth is a great option for most of the hospital-related doucheyness (plus it’s statistically safer for 90% of women!), but for the PKU the state will harass you and possibly even alert child services if you don’t get it done.

  12. The government can learn more about you by your Facebook account than DNA.

    Granted, DNA from a crime scene can identify you, but the only ones who have to worry about that are criminals. 😉

    1. That is until they find that raper gene… then we lock up those criminals BEFORE they get a chance to do bad stuff

      1. Yeah, we’ll just call it conspiracy and lock them up. Then keep them locked up on the basis that they are too dangerous to let out because we all know that they will think about doing it again.

      2. “”That is until they find that raper gene…”””

        On Facebook they will look for the raper profile. Complicated algorhythms based on raper behavior designed by top men.

        1. Ha! Top men! Rapists are just the storm troopers of the Patriarchy! Only wymyn scientist-shamyns can hope to find these criminals and protect society.

  13. If they want a baby’s DNA so bad, maybe they should pay fair compensation for it.

  14. My kids are older, but we sold them to Somali pirates anyway, so

    GOOD LUCK TRACKING THEM DOWN EVEN IF YOU HAD THEIR DNA, STATE! HAH!

  15. Wait, what am I thinking – BHO would just put out a hit on the pirates.

    Sorry kids, you can’t Xscape the looooong arms of the gummint. Even hanging with Somali pirates.

  16. I do not deny them my essence.

  17. Just some points for clarity here:

    1) Newborn screening should be debated separately from the storage of leftover samples. The screening is for inborn errors of metabolism that if left untreated can kill or severely affect infants within a few days. In most states these tests are opt-out for the familiar behavioral reasons (read: Nudge). Newborn screening is performed centrally in each state (or in multi-state labs) because the equipment and tests are very specialized and expensive, and the medical specialties involved in follow-up care aren’t available at most hospitals. The alternative to newborn screening is having a small but predictable and preventable proportion of infants die a horrible death or suffer lifelong disability. The Hayekian in me thinks that screening would get done one way or another by civil society, while the minarchist in me is just fine with it as it operates today.

    2) What is being stored is not DNA information, but the blood samples themselves. Clearly, blood samples contain DNA information, but the information remains locked in the sample until genotyped. You can go find an individual’s sample if you know who to look for, but you could not take an unknown person’s sample (from, say, a crime scene) and find out whose it is by “running it against the database”.

    3) Genotyping enough for your crime scene ID scenario might cost $20 per sample, genotyping enough to tell you about common disease risk would cost $250 per sample, and looking at the entire genome (which is not even currently feasible with these samples) would cost $2000-$5000 per sample. So you are talking about billions of dollars to move from stored samples to a database of genotypes.

    4) You all realize that you constantly shed DNA all over the place, and if anyone wanted to get yours all they’d need is your last can of Coke.

    None of this is to say that this is a good or justifiable practice. But neither is it the beginning of the Phillip K. Dick novel of your collective nightmares.

    1. There is a big difference between making a test available/highly recommended and making it mandatory upon threat of child protective services.

  18. P.S. Stored samples could just as well be used for exoneration as incarceration, homies.

    1. It may have escaped your exalted attention, but for purposes of exoneration, the accused is usually around to give a sample. (Unless you wish to proceed directly do execution and dispense with the necessity of a trial.) His/her birth sample is unnecessary.

      And, given the problems that Radley has documented for numerous labs, the potential for a “false positive” grows greater with the size of the database.

      In fact, I will flatly predict that, within 10 years, someone will be falsely convicted from bad information taken from one of the DNA databases.

  19. Thanks, Aresen. I meant posthumous exoneration. Clearly live prisoners seeking exoneration are happy to give out their samples.

    And speaking of exalted attention- did you miss the part about the stored newborn samples NOT being part of a genotype database? Exalted I will make this simple:

    1) There are NOT servers filled with every kid’s ATGC code.

    2) There ARE freezers filled with blood spots on filter paper.

    3) It WOULD take billions of dollars to get from samples to genotypes.

    So no, your prediction will not come true, if you’re talking just about the newborn samples. They are simply not in a form to be used that way, and they won’t become usable without a legislative appropriation that would surely attract more than a little notice.

    Perhaps the British arrestee database is more prone to abuse such as you suggested. I don’t know anything about it.

    1. 1) There will be. At least for large numbers of them.
      2) Freezers take more space than data.
      3) Costs are decreasing. 35 years ago it would have said it would take trillions of dollars to create the databases on the now available on the internet. It dropped by an order of magnitude, but the databases that exist were not created for the purpose of making a profit for Google. They were created for other reasons. Subsequently, other uses were found.

      Finally, with respect to the prediction, I was not limiting it to the ‘BABY BASES’, but if you had been paying attention to Radley’s The Agitator website, you would be aware that there are already quite a few DNA databases in the US that have been created for other purposes (including police dragnets).

      So my prediction stands.

      [And it won’t be long before the cops will be pressing to add the baby DNA to the database. Again, if you had been paying attention, the British Government tried to promote a universal DNA database just a couple of months ago. It was shouted down. But a requirement for everyone to carry ID would have been unthinkable 50 years ago. [If you think that there isn’t a defacto requirement for ID already, try refusing to produce ID when a cop stops you on the street.]

      1. Many people think WebMD is just a website to get medical information. They don’t know WebMD also has a billing clearinghouse that processes medical claims which has assessment (ICD codes) and treatment (CPT codes information.

        In the future, many information companies like google will hold ALL of your electronic transactions. Your phone records, medical records, travel records, school records, Emails, texts, ect. One day I bet school records will include most of your school work and exams.

        Less than 50 years ago that was tinfoil hat talk. But back then privacy was about keeping something between entities. Today privacy is about keeping data secure as it’s moved between entities.

    2. Ural,

      As you probably have realized by now, there are large numbers of irrational, overreacting, borderline hysterical people in these forums. They are convinced that anything and everything having to do with the government is evil, or will be used for evil, or is part of a vast conspiracy to destroy their lives and take away their liberty. This applies as much to money and banking as it does to infant blood samples.

      I admire your sharing of these pertinent facts, but warn you that you will never convince some people that there isn’t a nefarious scheme afoot.

  20. Well, for most baby boys born in the US they could use the excised foreskin for the DNA tests. Another terrific reason to circumcize!

    This post is mostly for Neu Mejican’s benefit.

  21. One good thing about DNA testing at birth is that it makes it a lot harder for a women to cuckold a man.

    1. Doesn’t help that unless they tested the purported father too.

    2. No it doesn’t. It just makes it more obvious nine months after the fact.

  22. Well, if you give birth at home like a Normal human being, you don’t have to worry about the test, or forced C- sections. And you won’t have to worry about some lab coat taking your child’s blood with out your consent.

    1. No, but in my area you do have to worry about getting child services called on you if you do have to transfer to the hospital for some reason.

  23. This is such a great resource that you are providing and you give it away for free. I love seeing websites that understand the value of providing a quality resource for free. It’s the old what goes around comes around routine.

  24. What? This should be against the law!

    This is total crap and has no right to have this shared. This is a privacy right, patient right, parent right and all being done without the consent of the parents!

    By court order CA state samples can be ordered by name for misc research companies! No way, this is a total violation of my families privacy. California never notified me of this violation when we had our child. More news on this states apparently they were suppose to offer parents to “opt out” but that has not been happening. They say you can write to them and they will destroy the samples? Yeah right. I want my card in my hand and the data deleted from their computers. to ensure that it’s no longer in their possession.

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