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Privacy Biotech Medicine

Newborns' Blood Used To Build Secret DNA Database 263

Posted by kdawson
from the texas-baby-blood-spots dept.
Kanel notes a summary up at New Scientist of an investigation by a Texas newspaper revealing that Texas health officials had secretly transferred hundreds of newborn babies' blood samples to the federal government to build a DNA database. Here's the (long and detailed) article in the Texas Tribune. From New Scientist: "The Texas Department of State Health Services routinely collected blood samples from newborns to screen for a variety of health conditions, before throwing the samples out. But beginning in 2002, the DSHS contracted Texas A&M University to store blood samples for potential use in medical research. These accumulated at rate of 800,000 per year. The DSHS did not obtain permission from parents, who sued the DSHS, which settled in November 2009. Now the Tribune reveals that wasn't the end of the matter. As it turns out, between 2003 and 2007, the DSHS also gave 800 anonymized blood samples to the Armed Forces DNA Identification Laboratory to help create a national mitochondrial DNA database. This came to light after repeated open records requests filed by the Tribune turned up documents detailing the mtDNA program. Apparently, these samples were part of a larger program to build a national, perhaps international, DNA database that could be used to track down missing persons and solve cold cases."
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Newborns' Blood Used To Build Secret DNA Database

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  • by Q-Hack! (37846) * on Monday March 01, 2010 @08:45PM (#31324824)

    But, how is a blood sample from somebody born in 2003 going to solve a cold case? I guess a seven year old is prone to murder.

  • by FlightTest (90079) on Monday March 01, 2010 @08:54PM (#31324924) Homepage

    Because the TFA certainly doesn't.

    How, exactly, are anonymized blood samples going to used to track down missing persons or solve cold cases, or do anything else that hinges on tying a person to that blood sample? That is assuming you believe the samples were actually anonymized, which there's no way to know for sure.

    I'm not defending what was done, but the only real use I can see would be statistical evaluation. Possibly a good idea, but the implementation (doing it without consent) is clearly wrong.

  • by yndrd1984 (730475) on Monday March 01, 2010 @08:58PM (#31324956)

    So there was no legal privacy issue, and no issue of legal property rights. And therefore the issue was moral or ethical, or that the legal system should be changed?

  • by Xamusk (702162) on Monday March 01, 2010 @09:02PM (#31324986)
    Probably, "anonymized" to them really means that only the person's name was erased. Yet, as most slashdotters know, there are other ways to track a person from other information. For example, the name may be gone, but if the hospital and birth date are yet in the database, it narrows down considerably the number of people being searched. And, as we all know, the db probably will be abused at some time.
  • by joocemann (1273720) on Monday March 01, 2010 @09:07PM (#31325034)

    Anyone else agree or disagree?

    Discuss... what kind of punishment should this yield?

  • by Sad Loser (625938) * on Monday March 01, 2010 @09:10PM (#31325044)

    the reason to harvest cord blood rather than anything else is because it is free, easy to collect, and has more than average stem cells.

    if in the future one of these people needs a bone marrow transplant, they have a perfect match. Research causes are also in there, but I very much doubt the legal/forensic side of things was considered in all this, and usually medical databases are quite thoroughly tied down in this respect.
  • by UnknowingFool (672806) on Monday March 01, 2010 @09:11PM (#31325050)

    The article brings up the specter of privacy violations without really explanation that the combination of the anonymized and mitochondrial DNA makes identification difficult. In fact, the article makes it appear that mtDNA is somehow more definitive than nuclear DNA. Yes, it was a violation of rights to collect and store the samples.

    I'm wondering how 800 "anonymized" samples of mitochondrial DNA going to help solve any cold cases. First it's mitochondrial DNA which is not as distinctive as nuclear DNA. For humans, it links maternal parentage not individual characteristics. Second, it's "anonymized" meaning that using them in identification later is unlikely.

  • by pla (258480) on Monday March 01, 2010 @09:14PM (#31325062) Journal
    How, exactly, are anonymized blood samples going to used to track down missing persons or solve cold cases, or do anything else that hinges on tying a person to that blood sample?

    TFA actually refers to two separate programs.

    The first, and more chilling of the two, Texas hospitals have sent all newborn blood samples for entry into a DNA database since 2003. The second part, which came to light only because of the suit by parents over the first point, involves 800 anonymous samples for an mtDNA database. That part sounds reasonably innocuous (if still lacking in prior consent).


    So, how "should" we feel about this? We should feel pretty damned pissed, and each and every one of us should flood our states, towns, and local hospitals with FOIA requests about possible variants of similar programs in our own areas. We should also (but of course won't) riot in the streets demanding the immediate destruction of this database and all samples taken, as well as a goddamned constitutional amendment explicitly granting us "genetic privacy" rights from both government and private (aka commercial) entities.

    Instead, this will just fade from view without anyone really noticing or caring, and will expand until it contains each and every human in the country (and eventually, on the planet). And we'll still fail to stop illegal immigration or terrorist attacks, but you can bet your last penny it'll affect your ability to get loans and various types of insurance.

    "Oh, sorry, your Genetic Rating (tm) says you probably won't live long enough to pay us back, can't help you with that new car".
  • by rec9140 (732463) on Monday March 01, 2010 @09:24PM (#31325144) Homepage

    >Anyone else agree or disagree?
    >Discuss... what kind of punishment should this yield?

    Some thing far more terminal, painful, and with extreme prejudice, and being Texas I think the residents are probably well equipped to handle it.

  • by shadowbearer (554144) on Monday March 01, 2010 @09:38PM (#31325254) Homepage Journal

    Typically if they take a tissue sample from you at the hospital, it belongs to them

      No. It "belongs" to the being it was taken from. The being it was taken from has first "copyright"/"patent"/"trademark" to it (add whatever terms the lawyers feel necessary, here)

          It does not matter who sequenced it first. It does not matter whether it has unique properties. It does not matter who it was taken from, whether they consented to it, or not.

      No corporation, government, nor any other entity, can own anything about me that I do not give explicitly give them rights to.

      Legislators can pontificate as much as they want to, there are things that we - as human beings - won't give up. This is one of them. History proves that.

      If those in power wish to [continue] to do so, they will suffer the same fate as their predecessors have; they will eventually be replaced.

      Fools.

    SB

  • by Michael Kristopeit (1751814) on Monday March 01, 2010 @09:38PM (#31325256)
    and how do you explain that to a child without having them conclude that society expects them to one day commit crimes?
  • by UnknowingFool (672806) on Monday March 01, 2010 @09:46PM (#31325316)

    Therefore, if a child's record happens to match up with, say a kidnap/run-away

    Since the samples were anonymized, there is no child's record but a record of an unknown donor. If you have a kidnap victim/run-away, you can test their nuclear DNA directly with the parent or with a maternal relative with the mitochondrial DNA. The database has no real use in this case. At best if you compare the child with a sample in the database, you might get a hit but you don't know who supplied the sample in the database.

  • by langelgjm (860756) on Monday March 01, 2010 @10:44PM (#31325712) Journal
    On the legal side, Moore v. Regents of the University of California [wikipedia.org] is one of the most important cases on this issue.

    As for your comment, you have an interesting political philosophy. Ideas like property and ownership are neither inherent nor immutable. Absent government, society, and laws, things like "property", "ownership" and "mine/yours" are pretty much defined by what you can physically control or prevent others from taking from you. So sure, you own your shit (figuratively and literally) as long as you can stop anyone else from taking it. State of nature and all that.

    Of course none of us are in the state of nature anymore, we all live in societies with governments and legal systems that define certain sets of property rights and interests. I don't claim to be up to date on ownership of tissue issues, just recall that case from a class I took a while ago. But my point is that you make a philosophical claim about the nature of property and base it on a relationship between a human and an object. But property is fundamentally social: it is about a relationship between a human and another human with respect to some object.
  • by Anonymous Coward on Monday March 01, 2010 @11:03PM (#31325852)

    I decide who researches with my DNA

  • by Anonymous Coward on Monday March 01, 2010 @11:26PM (#31325996)

    If Hitler had this technology, the Jews would no longer exist.

  • by Hurricane78 (562437) <deleted@s l a s h dot.org> on Tuesday March 02, 2010 @04:09AM (#31327396)

    No need to throw in bullshit fantasy words like “copyright/trademarks/patents” in there.
    It’s a physical object. The word is: OW.NER.SHIP.

    You own your body. That is perhaps the single most foundational law of all laws ever written. (Countless laws use it as a base. E.g. all basic rights!)

    So you own your blood sample. plain and simple. If they take it away from you, even as a baby, without your agreement, that is theft. Plain and simple. And a huge invasion of privacy too. Perhaps even bodily harm.
    Of course as a baby, your parents are your legal representatives.

    But about the rest of your comment: I completely and wholeheartedly agree!

  • by Jedi Alec (258881) on Tuesday March 02, 2010 @05:06AM (#31327628)

    You own your body. That is perhaps the single most foundational law of all laws ever written. (Countless laws use it as a base. E.g. all basic rights!)

    Yet the debate about whether or not a woman has the right to take chemicals to induce her body to flush a mass of cells that is forming inside her continues unabated.

  • by pla (258480) on Tuesday March 02, 2010 @10:31AM (#31329534) Journal
    If you'd RTFA (I know This Is Slashdot) you'd have read that:

    Believe it or not, some of us already knew the context of this issue and brought in information from other sources. For example: [cchconline.org]

    In Texas, five parents filed a lawsuit through the Texas Civil Rights Project on March 12, 2009. Texas settled their lawsuit by agreeing to destroy blood spots collected without parent consent since 2002 (all blood spots before a May 27, 2009 opt-out bill became law), but keeping the genetic test results indefinitely. The new law allows retention of newborn blood spots (DNA) unless parents sign a form either the day of the screening when they receive the form or any time in the future.

    So basically, yeah, they destroyed the original blood samples. And you can opt out of them keeping such samples in the future. But they will keep the DNA they already have, and they will collect the blood and keep the DNA from it in the future.

The trouble with the rat-race is that even if you win, you're still a rat. -- Lily Tomlin

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