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.
The state of Minnesota’s web site says that samples are kept so tests can be repeated, if necessary, and in case the DNA is ever needed to help parents identify a missing or deceased child. Some samples are also used for medical research.
The genetic testing of newborns began in the 1960s with screening for diseases and conditions that, if undetected, could cause severe conditions such as mental retardation, or even kill a child. Since it began, the screening has helped save countless newborns according to the report.
Many other tests have since been added to the list. States now mandate that newborns be tested for anywhere between 28 and 54 different conditions. The DNA samples are stored in state labs for anywhere between three months to indefinitely, depending on the state. This interactive state-by-state list shows how long your baby’s DNA is stored.
Specimens are Often Given to Outside Researchers With the Baby’s Name Still Attached
Some states allegedly have very rigid controls in place for those specimens, but those specimens don’t always stay in the state labs. Oftentimes specimens are given to outside researchers — sometimes with the baby’s name still attached.
A study done by the state of Minnesota found more than 20 scientific papers using newborn blood samples have been published in the United States since 2000. According to the author of the report, the researchers do not have to have parental consent to obtain samples as long as the baby’s name is not attached, but if a researcher wants a sample with a baby’s name attached, the parents must give their consent.
One problem with having a state taking your baby’s DNA involves potentially being unable to get insurance. If a health insurance company pays for the testing and a problem is found, it will be made known to the insurance company, who, in the future, could deny coverage.
Some states, including Minnesota and Texas, are required to destroy a baby’s DNA sample if a parent requests it. Those two states require the parents to fill out a form. The form for Minnesota is here (PDF) and the form for Texas is here (PDF). Parents in other states aren’t so lucky. You can try writing a letter asking your state to remove and destroy your baby’s DNA, but there is no guarantee that they will.
More information on the screening programs is available at the National Newborn Screening and Genetics Resource Center from the University of Texas Health Science Center at San Antonio.