The Texas Tribune‘s Emily Ramshaw got her hands on almost a decade of public e-mails that help show the thoughts and intentions behind the state’s decision to store infant blood samples without parental consent. She also uncovered a previously undisclosed “transfer of hundreds of infant blood spots to an Armed Forces lab to build a national and, someday, international mitochondrial DNA (mtDNA) registry.”
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Ramshaw’s report follows officials’ intricate dance around the issue of parental disclosure, as well as their reluctance to publicize the warehousing of the blood samples. Here’s her summary:
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.
According to Ramshaw’s sources, baby blood spots are “incredibly valuable” to researchers, and can be useful even when stripped of all identifying information. Yet public perception doesn’t line up with this scientific value in part, Ramshaw says, because scientists are unwilling to even try to explain the use of blood spots because it’s such a controversial topic.
Fortunately, Ramshaw writes, the first steps toward educating the public are now being taken. Parents are being asked for their informed consent when the blood samples are taken, and the state health agency has made a clean break with the past by destroying the earlier blood spots collected without full consent.