A report that the state of Texas forwarded the DNA from hundreds of newborn babies to a military database without parental permission or knowledge raises some very alarming questions about what was done and why, according to a national expert in DNA privacy.
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The Texas Tribune, an online publication founded by a former editor of the Texas Monthly and a longtime owner of the Texas Weekly, recently published a story about the Department of State Health Services in Texas giving some 800 DNA samples to the Armed Forces Institute of Pathology's DNA Identification Laboratory.
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The actions were uncovered as part of the publication's review of nine years' worth of e-mails over the collection of babies' DNA, which recently was targeted by a lawsuit.
WND reported late last year that the dispute was settled out of court, providing a victory for genetic privacy but also highlighting the need for states to start obtaining informed consent from parents over the uses for the DNA of their newborns, said Twila Brase, chief of Citizens Council on Health Care.
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Brase earlier praised the settlement under which state officials agreed to destroy some 5.3 million blood samples collected from newborns that had been kept on file by the state without permission.
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According to the Tribune report, Texas officials routinely collected blood spots to screen for health issues. Then around 2002, officials started storing the blood spots on cards at Texas A&M University.
But officials never obtained parental permission and found themselves targeted by a lawsuit over their actions.
The Tribune reported that in addition to storing the blood spots, the state gave 800 samples – from which it removed identifying labels such as names and dates – to the military operation.
The paperwork trail the publication uncovered revealed federal officials wanted to share the database worldwide "for international law enforcement and investigation in the context of homeland security and anti-terrorism efforts."
According to the report, Jim Harrington, the civil rights attorney who took on the original case on behalf of parents, suggested that an effort to keep the new revelations secret was behind the state's decision to settle the prior case.
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In a report in New Scientist on the issue, links were provided to archived e-mails showing that state officials tried to limit the release of information about the DNA.
Brase, who has battled state lawmakers and others in Minnesota over genetic privacy concerns there, said the use of newborns' DNA for a military database raises concerns on a number of levels.
"This is the government," she told WND. "This is what people forget. This is the government planning to create a DNA warehouse of citizens."
The military database website explains it is "to provide DNA reference specimen collection, accession, and storage of United States military and other authorized personnel."
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"What we have here are innocent babies," Brase said. "Not only have they not done anything, they couldn't. What's the rationale?"
She said it appeared that the goal was an overall database that eventually would include the DNA from many groups of people, operated by the federal government or its military.
"They've done it. They asked for samples. They've gotten DNA. They are conducting something," Brase said. "Everyone should be alarmed at the fact the government is so obviously going beyond terrorists themselves as they create this DNA databank."
Brase has worked to protect infant DNA since her organization discovered the Baby DNA Warehouse in her state of Minnesota in 2003.
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"State storage and subsequent transfer of newborn DNA to the federal government for law enforcement and anti-terrorism efforts in an egregious violation of individual rights," she said. "No adult would allow the government to store their DNA without consent and no expectant parent should enter a hospital in fear of what will happen to their infant's DNA after the state's newborn genetic screening is completed."
Her organization has assembled and posted online a report documenting each state's procedures and policies for handling newborns' DNA samples.
Brase has warned repeatedly that the collection and assembly of DNA on an entire generation of citizens largely is taking place without notice, but such newborn screening "represents the largest single application of genetic testing in medicine." She's issued an extensive report on the problem.
"Suppose … expanded screening of an infant reveals not a fatal and incurable disease but instead a host of genetic variants, each of which merely confers elevated risk for some condition or other," her report said. "Who is to say at what point an uncovered defect becomes serious enough to warrant preventing the birth of other children who might carry it? At what point have we crossed the line from legitimate family planning to capricious and morally dubious eugenics?"
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Further, her report said most parents "have no idea that government is doing the testing or retaining the data and DNA."
"It is not hard to imagine the day when any discovered but nonsymptomatic condition could
become a 'pre-existing condition' for which private insurers would not pay. The eugenic
implications are obvious. Thus, the growing collection of genetic test results and newborn DNA
could easily enable a eugenics agenda on the part of government agencies and private industry," the report said.









