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    Update on Texas’s Gathering and Undisclosed Use of Newborns’ Blood Samples

    A few months ago, Texas announced that, as part of a lawsuit settlement agreement with the Texas Civil Rights Project, it would destroy five million blood samples taken from babies without their parents’ consent, a tactic that raised substantial privacy questions. Now, the Texas Tribune has learned, Texas officials also “were turning over hundreds of dried blood samples to the federal government to help build a vast DNA database.”

    A Texas Tribune review of nine years’ worth of e-mails and internal documents on the Department of State Health Services’ newborn blood screening program reveals the transfer of hundreds of infant blood spots to an Armed Forces lab to build a national and, someday, international mitochondrial DNA (mtDNA) registry. The records, released after the state agreed in December to destroy more than 5 million infant blood spots, also show an effort to limit the public’s knowledge of aspects of the newborn blood program, and to manage the debate around it. But the plaintiffs who filed the lawsuit never saw them, because the state settled the case so quickly that it never reached the discovery phase.

    DSHS spokeswoman Carrie Williams says that while the department’s general philosophy was to save blood spots for public health research, “we did not have an exclusive policy.” She says DSHS participated in the project because officials believed it would help in missing-persons cases — and knew the blood spots could not be linked back to a particular individual. […]

    For decades, the state has screened newborns for a variety of birth defects, pricking their heels and collecting five drops of blood on a paper card. Until 2002, the cards were thrown out after a short storage period. But starting that year, the state health department began storing blood spots indefinitely, for “research into causes of selected diseases.” Four years later, DSHS began contracting with Texas A&M University’s School of Rural Public Health to warehouse the cards, which were accumulating at a rate of 800,000 a year. State health officials never notified parents of the changes; they didn’t need consent for the birth-defect screening, so they didn’t ask for it for research purposes. The agency’s rationale was that it let parents who asked opt out of the newborn blood screening and de-identified all of the samples before shipping them off. […]

    Whether Texas officials were concerned about the perception of the project, or simply didn’t think it was newsworthy, they never mentioned it. In presentations, in public reports and in e-mails sent to reporters as recently as last year, state health officials never brought up the federal project — even when they discussed the merits of roughly two dozen medical research projects designed to “unlock the causes of childhood disorders” like autism and diabetes.

    The Austin-American Statesman reports that Jim Harrington, director of the Texas Civil Rights Project, has threatened to file a new lawsuit against the state, saying he was never told of this use. “This is the worst case of bad faith I have dealt with as a lawyer,” he said. “I can’t tell you how many times we sat there, and they said no law enforcement,” Harrington said of the previous lawsuit negotiations. “They said, ‘It’s only about medical research, it’s only about medical research.’ ”

    Jerry Strickland, a spokesman for the Texas attorney general’s office, which represented the health department, fired back. “During this litigation, Harrington was provided accurate answers to the questions he asked,” he said. […]

    Carrie Williams, a health department spokeswoman, said the program wasn’t mentioned because, “We don’t publicize every agency initiative or contract, and obviously this is a sensitive topic.” […]

    Williams said the project has been listed on the Web site for weeks and “falls under the broader category of public health research.”

    The Statesman also notes that the Texas legislature “approved a law in May that requires medical professionals to inform parents or guardians that the blood spots are being collected, stored and could be used for research. Parents who object could opt out.”

    I’ve written before about the unauthorized or unknowing retention and use of newborn babies’ blood samples for purposes other than disease screening. The Washington Post has written about the ethics and privacy issues when children’s medical data is collected and retained without parents’ knowledge or consent.

    Privacy issues connected to newborns’ blood samples have been raised internationally, as well. Last month, the Times Online reported that a Dublin, Ireland, hospital was being investigated by the Data Protection Commissioner over reports the hospital “has built a database containing the DNA of almost every person born in the country since 1984 without their knowledge in an apparent breach of data protection laws.” In New Zealand, the Privacy Commissioner warned against expanding the use of such genetic data beyond disease testing, noting DNA is the “ultimate marker of identity.” A Tel Aviv University researcher’s article in Science said we don’t know the future privacy or civil liberty implications of distributing children’s genetic data.

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