Routine screening for a panel of genetic diseases, often done without the parents’ consent, is mandated by the government on all babies born in the U.S., and many states, also unbeknownst to the parents, reportedly store newborn babies DNA indefinitely, sparking a new debate about whether it’s appropriate for a baby’s genetic blueprint to be in the government’s possession.
Many parents are unaware that their baby’s DNA is being stored in a government lab, but when they find out, they take action. Parents in Texas and Minnesota have filed lawsuits to have their baby’s DNA removed from government’s newborn baby DNA data base.
Texas reportedly transferred hundreds of infant blood spots to an Armed Forces lab to build a national — and someday international — mitochondrial DNA (mtDNA) registry between 2003 and 2009. Records released after the state agreed in December to destroy more than 5 million infant blood spots, also revealed that an effort was made to limit the public’s knowledge of aspects of the newborn blood program and to manage the debate around it. A lawsuit was filed but the plaintiffs never saw the records involved because the state of Texas settled the case so quickly that it never reached the discovery phase.
States Now Mandate that Newborns be Tested for 28 to 54 Different Conditions
Starting in 2002, the Texas state health department reportedly began storing blood spots indefinitely, for “research into causes of selected diseases.” Four years later, Texas started contracting with Texas A&M University’s School of Rural Public Health to warehouse the blood spot 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 parental consent for the birth-defect screening so they didn’t ask for it for research purposes. More on what the Texas Tribune calls the “DNA Deception” can be found in this article.