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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 Anonymous Coward on Monday March 01, 2010 @08:05PM (#31325014)

    Aside from property rights, there's also an implied right to medical confidentiality.

  • by pookemon (909195) on Monday March 01, 2010 @08:40PM (#31325274) Homepage
    Yes - however all the products that are derived from blood have a very finite life. For example Plasma extracted from blood (which is used in a significant variety of products produced by CSL in Australia) lasts around 90 days (IIRC). Blood used in transfusions lasts about 30 days, platelettes even less. Cord blood is used for type specific transfusions in other patients, rather than for the original donor and even though parents can pay for long term storage of their childs cord blood, the viability of these samples are questionnable at best. The other issue is that if the illness that requires the blood transfusion is caused by genes then the use of the childs original cord blood may be pointless.
  • by Anonymusing (1450747) on Monday March 01, 2010 @08:42PM (#31325286)

    Where did you read that they were storing cord blood? The article says blood spots [texastribune.org].

  • by rritterson (588983) on Monday March 01, 2010 @08:49PM (#31325348)
    Let me explain to you why this is not as scary and outrageous as it would first seem. The summary and article are very good ones, but don't provide enough context for a non-expert to understand how serious/non-serious it is:

    As the summary indicates and RTFA seems to confirm, DSHS collected the samples for use in anonymous human medical research. This is done all of the time, as another poster commented (and gave the great example of HeLa cells). Typically, an oversight committee reviews a great many details about your research plan and ensures your collection methods are sufficiently anonymous, and your research is done in such a way as to avoid revealing the identity of the sample if at all possible. (Usually, users are separated from the database maintainers, and the users never even know the identities of the samples).

    As one example, co-worker of mine receives nasal swabs of infected children in Nicaragua, under the auspices of WHO and CDC. He screens them using very expensive diagnostic assays that aren't viable in the clinic but are useful for basic research. His lab has discovered several new viruses in these samples that weren't previously discovered due to geographic bias in clinical cohorts (you sample the people most likely to be able to pay for the cure). He never knows the names of the children, just age, symptoms, and previous infections. He has to renew his certification to work with human samples once a year to ensure he knows all relevant legal and ethical regulations, and must update his research plan regularly, and receive annual approval from the oversight committee, even if he doesn't change anything. (And must stop all research if he procrastinates and certification lapses) However, without being able to use these samples, both basic research and clinically relevant research would be hampered. DSHS probably operates in the same way.

    The issue here is that these samples were passed to the federal government and they used them to build a DNA database. People sued primarily because DNA is considered very personal information in this country and having the government track you using it is a current moral panic/boogeyman. (Partially warranted, partially not). In this case, however, they were using mitochondrial DNA, which is separate from your normal chromosomal DNA. Because sperm have no mitochrondia, all of your mitochondrial DNA is passed matrilineally (i.e. from mother to child-- sons cannot pass it on at all). Because you only have one copy, it does not undergo recombination during sperm/egg generation, and thus changes very very slowly. As a result, people like the National Geographic Society are using the information to trace human migration patterns throughout history using mitochondrial sequence information (google it). However, because it's so similar from person to person ---it is unlikely to be able to be traced directly back to you or identify you the way your chromosomal DNA is--- instead, it can tell where your mother's mother's mother's mother's mother's mother came from, i.e. your ethnicity. With enough samples it may even be able to tell whether you are a recent immigrant, a long term american, etc. This means that, using this database as a source, police may one day collect mtDNA from a crime scene and know they are looking for a person from Eastern Europe that is 1st-3rd generation american. That is, it can be used to narrow suspects, but can't be used to identify you directly.

    So, in the end, the information (at least to me, as a molecular biologist) is relatively harmless and perhaps even good, in balance. However, given the serious objections people would likely have if they had known their information would be used in this way, the oversight committee should have required additional consent to use and collect this information for each person's sample they collected (and insured the people who gave consent gave informed consent). That would have avoided the mess entirely, and been more ethical.
  • by freedom_india (780002) on Monday March 01, 2010 @09:11PM (#31325486) Homepage Journal

    Nope. Will NEVER happen.
    Why?
    1) Its Texas.
    2) The officials were helping the Govt. commit a crime. You can't convict a Govt.
    3) Even if everything goes OK, the state dept will cite official secrets as a reason to get the case thrown out.

    Tell me how many officials have been convicted so far in:
    1) Public prosecutors firing
    2) CIA agent outing.
    3) Katrina failures
    4) Gitmo tortures

  • by bcrowell (177657) on Monday March 01, 2010 @09:50PM (#31325764) Homepage

    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. [...] 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 post you're responding to was specifically about the ethical issues involved, not the legal ones. However, your post seems to be entirely a description of what you think the law says. You're incorrect about the law. (I assume we're talking about U.S. law here, since TFA was about something that happened in Texas.) Common law has said since Haynes' Case, in 1613, that bodies and parts of bodies are not legal property. This principle was upheld in the U.S. in 1990, in Moore v. Regents of the University of California [wikipedia.org], which ruled that a cancer patient had no property right relating to the commercial use of his cancer cells. The most recent case to uphold the same principle was Washington University v. Catalona (2006), in which patients sued to get back their samples of prostate tissue, blood, and DNA, and the court ruled that the samples were not their property.

  • by Real1tyCzech (997498) on Monday March 01, 2010 @11:04PM (#31326220)

    "Go try to find bread in the store that doesn't have chemically altered high fructose corn syrup in it."

    Did that ages ago...

    http://www.retailrelay.com/Arnold-Country-White-Bread-1-Lb-8-Oz-P1407.aspx [retailrelay.com]

    Arnold bread. Many of their varieties contain *NO* HFCS. :)

    Usually available in any major supermarket, usually decently priced.

  • by hansg (264039) <hans@gunnarsson.gmail@com> on Tuesday March 02, 2010 @01:11AM (#31326960)

    and usually medical databases are quite thoroughly tied down in this respect.

    I don't know much about this case, but in Sweden we have a national test for all newborns, where they collect blood to check for a few diseases (PKU, the google is your friend). When they have checked it, they store the information "for research purposes".

    When our minister of foreign affairs was killed, the Police requested samples from the database and got them.

    So, don't count on the database staying "for research purposes"...

    /Hans

  • by mcgrew (92797) * on Tuesday March 02, 2010 @09:00AM (#31329178) Homepage Journal

    More importantly, a law has already been broken and the newborn is the victim. HIPPA forbids sharing these data. Someone should go to prison for this egregious assault on the civil rights of Americans.

    Don't give me that "civil liberties" crap; they're not just liberties, they're RIGHTS. And Texas is violating them. Texas, hypocritically and ironically claiming to be the state most individualistic. What a crock.

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