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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 ak_hepcat (468765) <leif AT denali DOT net> on Monday March 01, 2010 @07:49PM (#31324862) Homepage Journal

    Okay, we pardon it.

    But only because you haven't figured out that parents pass their genes on to their children, and that prior samples might be matched against 'new blood'

  • by bcrowell (177657) on Monday March 01, 2010 @07:51PM (#31324880) Homepage

    This is actually not that unusual. Typically if they take a tissue sample from you at the hospital, it belongs to them, and you have no property rights over it. For an extreme case, check out the story of Henrietta Lacks [wikipedia.org], who died of cancer in 1951. They took cells from her tumor, kept them alive indefinitely, and commercialized them. Her relatives didn't know about any of this until decades later.

    As TFA notes, these blood samples were anonymized, and mitochondrial DNA cannot be traced back to individuals.

    So there was no privacy issue, and no issue of property rights. And therefore the issue was...?

  • by Taco Cowboy (5327) on Monday March 01, 2010 @08:19PM (#31325104) Journal

    * To identify races?
    * To profile racial difference?
    * To track individuals (and/or families), crime involvement, education level, whatnots?
    * To look for certain special DNA strains?

    BIG BROTHER knows no bound, does it?

  • by mveloso (325617) on Monday March 01, 2010 @08:30PM (#31325184)

    Actually, it's not as straight-forward as you think. There are a few people who have successfully asserted rights to their blood chemistry, etc. The NYT did an article on it a while back, which I can't find.

    The medical profession doesn't like this, because it complicates their finances. Your line is what they tell the public, because it benefits the medical community.

    Your blood chemistry, etc is your property, if you want it to be.

  • by bcrowell (177657) on Monday March 01, 2010 @08:41PM (#31325282) Homepage

    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?

    Okay, let's split up the two issues, which are different.

    Privacy:

    IMO the absence of a privacy violation here is not just a legality. There was no violation of privacy at all in this case. Not violation in any legal sense, and no violation in any ethical sense. The mitochondrial DNA cannot be traced to individuals, so the individuals' privacy has been maintained. It's no more a violation of privacy than if someone had gone to the doctor with a case of syphilis, and the doctor duly reported it as a statistic to some government agency, with no personally identifiable information.

    Property:

    Re the property side of things, sure, please go ahead and make a case for this. What is the ethical problem with the current legal setup?

    It seems to me that the current legal setup is the best one in terms of ethics. It allows medical research to be carried out, without making it necessary for doctors or hospitals to beg and plead and negotiate for the rights to study someone's cancer cells or whatever. Ethically, I don't believe that these people have any property claim. I expel my body wastes into the sewers without any expectation that the city will negotiate with me individually for the possible economic value of those wastes. When I cut my hair and nails, the cuttings go in the trash, and I don't expect the city to enter into a bargaining process with me about what they're worth. IMO we have a situation where there's no ethical expectation that parents will retain any property rights to blood samples taken in the hospital, and where there may be benefits to society in using those samples in various ways. Therefore I don't think it's ethical to allow individuals to veto the use of the samples from their kids. Should they be able to opt out? I don't see why. It would have a negative effect on society by biasing the sample.

  • by Paleolibertarian (930578) on Monday March 01, 2010 @09:31PM (#31325608) Journal

    You are wrong. When a person discards human waste, hair, nail, urine, feces, saliva, blood, cancer cells or whatever there is no legal expectation of privacy or property as you say. However when a tissue sample is given there is an expectation that it will be used ONLY for the purpose for which it was given. Any other use without the explicit permission of the owner is wrong and should be prohibited.

    If a person drinks from a soda can and then discards that can then any DNA on the can, assuming traceability, can be used in a criminal case but if the person keeps the can then discards it without traceability then it cannot.

    In the case of whether a doctor would need permission for a tissue sample to be entered into a database or some other and especially commercial use would be clear. A person's tissue is his property and cannot be used for purposes other than what he has explicitly permitted. In the case of the cancer patient you mentioned her body would become property of her estate and any use commercial or otherwise would need to be approved by the patient's heirs. If profits are made from a tissue sample then the heirs are entitled to royalties.

    The idea of negative effects upon society by enforcing privacy and property rights are simply well, socialistic.

    Edwin

  • by B1ackDragon (543470) on Monday March 01, 2010 @10:06PM (#31325868)
    I was going to say something about the relative rates of drift in mitochondrial dna, but I think you've hit it spot on. I take it there aren't any microsatellites in mtDNA?

    Anyway, for those interested, here's [pubget.com] an interesting paper regarding a relatively variant region in mitochondrial dna, but for butterflies, rather than humans. Notice that even in butterflies (which have a generation per year), there are some variants which are present over a vast portion of the range of the species---definitely not useful for identifying individuals.
  • by besalope (1186101) on Tuesday March 02, 2010 @01:01AM (#31326904)

    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.

    Mitochondrial DNA is different from the DNA everyone else knows about. When the Egg is fertilized, the Mitochondria from the mother is contained inside the egg. Thus, identical mitochondrial DNA will exist through the maternal hierarchy of families.

    Using Mitochondrial DNA, you can trace back and find some relatives (not all, but a fair amount). The mtDNA database can scan mtDNA samples from crime scenes and compare the results against the newborn mtDNA to see if any of their family members had committed such crime, therefore narrowing the scope of the investigator's search be a large margin.

    This is powerful tech, that is sadly going to be used in the wrong way.

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