Did anyone know about this?
I’m always amazed that the reality of the situation is actually worse than I realize.
It’s simple, the pediatrician answered: Newborn babies in the United States are routinely screened for a panel of genetic diseases. Since the testing is mandated by the government, it’s often done without the parents’ consent, according to Brad Therrell, director of the National Newborn Screening & Genetics Resource Center.
In many states, such as Florida, where Isabel was born, babies’ DNA is stored indefinitely, according to the resource center.
Genetic testing for newborns started in the 1960s with testing for diseases and conditions that, if undetected, could kill a child or cause severe problems, such as mental retardation. Since then, the screening has helped save countless newborns.
Over the years, many other tests were added to the list. Now, states mandate that newborns be tested for anywhere between 28 and 54 different conditions, and the DNA samples are stored in state labs for anywhere from three months to indefinitely, depending on the state. (To find out how long your baby’s DNA is stored, see this state-by-state list.)
Brad Therrell, who runs the federally funded genetic resource consortium, says parents don’t need to worry about the privacy of their babies’ DNA.
“The states have in place very rigid controls on those specimens,” Therrell says. “If my children’s DNA were in one of these state labs, I wouldn’t be worried a bit.”
The specimens don’t always stay in the state labs. They’re often given to outside researchers—sometimes with the baby’s name attached.
In some states, including Minnesota and Texas, the states are required to destroy a baby’s DNA sample if a parent requests it. Parents who want their baby’s DNA destroyed are asked to fill out this form in Minnesota and this form in Texas.
Parents in other states have less recourse, says Therrell, who runs the genetic testing group. “You’d probably have to write a letter to the state saying, ‘Please destroy my sample,’” he says.
He adds, however, that it’s not clear whether a state would necessarily obey your wishes. “I suspect it would be very difficult to get those states to destroy your baby’s sample,” he says.
