While grateful to have the information — Isabel received further testing and she doesn’t have the disease — the Mankato, Minnesota, couple wondered how the doctor knew about Isabel’s genes in the first place. After all, they’d never consented to genetic testing.
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.
Many parents don’t realize their baby’s DNA is being stored in a government lab, but sometimes when they find out, as the Browns did, they take action. Parents in Texas, and Minnesota have filed lawsuits, and these parents’ concerns are sparking a new debate about whether it’s appropriate for a baby’s genetic blueprint to be in the government’s possession.
“We were appalled when we found out,” says Brown, who’s a registered nurse. “Why do they need to store my baby’s DNA indefinitely? Something on there could affect her ability to get a job later on, or get health insurance.”
According to the state of Minnesota’s Web site, samples are kept so that tests can be repeated, if necessary, and in case the DNA is ever need to help parents identify a missing or deceased child. The samples are also used for medical research.
Art Caplan, a bioethicist at the University of Pennsylvania, says he understands why states don’t first ask permission to screen babies for genetic diseases. “It’s paternalistic, but the state has an overriding interest in protecting these babies,” he says.
However, he added that storage of DNA for long periods of time is a different matter.
“I don’t see any reason to do that kind of storage,” Caplan says. “If it’s anonymous, then I don’t care. I don’t have an issue with that. But if you keep names attached to those samples, that makes me nervous.”
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