Are We Closer To ‘1984’ Than We Think?

Or perhaps the world of the movie “Gattaca”, at least. The article from Science Insider certainly makes for some interesting reading, and also evokes a tone that might be scary to many readers.

With a title letting us know that the state of Texas was allowing samples of infants’ blood to be used in a forensic database, the thoughts of every science fiction tale gone wrong appear in the reader’s mind.

Dogged investigation by a non-profit online media organization in Texas has revealed that between 2003 and 2007, the state quietly gave hundreds of newborn blood samples to a U.S. Armed Forces laboratory for use in a forensics database. The revelation will likely raise questions about how newborn screening programs are run and how the samples are disseminated, almost always without families knowing where they go.

In this case, 800 blood samples were to be part of a new, national mitochondrial DNA database intended as a reference databank for the forensic community and for research into mitochondrial DNA variation—DNA we inherit from our mother. California, Minnesota, and Florida have also reportedly supplied infant blood samples to the effort, according to The Texas Tribune investigation.

If that were the only reason for the database, people might not have reason to be quite so upset. As it is, it is certain that law enforcement communities are being given access, as well as perhaps the very worst thing – insurance companies.

Like virtually every state, Texas routinely screens almost all newborns for rare diseases, collecting a few drops of blood at birth. In recent years many states, Texas included, have stored the samples and offered them up for research, mainly in pediatrics. Because the samples are anonymous (though they may come with some demographic information, depending on the study), researchers have argued that they don’t need to seek informed consent to use them.

That hasn’t gone over well recently; in March of last year, a civil rights group sued the Texas screening program. In December, the state settled the case and agreed to destroy all newborn blood spots collected before May 2009, when legislation passed allowing for sample storage.

That’s where the story gets interesting. The Texas Tribune describes a drawn-out effort to review records of the newborn blood spots. After a couple requests, the Texas Department of State Health Services released a batch of documents, which included a single e-mail mentioning the mtDNA project at the Armed Forces Institute of Pathology in Washington, D.C. “When the Tribune pressed health officials about the missing research files, they produced them, saying it was an oversight, and that the documents had been overlooked in their initial search,” writes The Tribune’s Emily Ramshaw.

There’s growing concern among researchers that public wariness about the newborn screening program will create a backlash—with parents declining to screen their kids (who may end up much sicker because their disease wasn’t caught early), and with the spots no longer made available for valuable pediatrics research, such as tracing the origins of childhood leukemia. This new revelation is likely to fan those flame—even if the samples in question are being destroyed.

Perhaps the original purpose was to do good, and much of what was, and is, done could very well be good, but there is no way to control the dissemination of the data once it is outside the sphere of the originating source. If the purpose of the test is to check for disease, once the disease has been identified, the child should be treated, and the statistical information gathered, but the specific information should be destroyed.

This is an area of government where privacy is of the utmost concern. Anyone not seeing this point simply is not paying attention.

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Mad as Hell (Howard Beale-Network) If anyone is worried about “death panels” this could be the fuel for them, long before any disease is found to be in progress. For every doctor that is working for good, and trying to eliminate suffering, there are usually 3 who are trying to re-engineer the human race in terms most agreeable to themselves. It is those three we must be wary of.

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