Big Brother May Have Your Baby's DNA

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Annie Brown, pictured with daughter Isabel, was shocked to learn that her baby's DNA was in the hands of the feds. Credit: Gregg Andersen

The government may have your baby's DNA on file.

Newborns in the United States are regularly screened for various genetic diseases. These tests are mandated by the federal government.

As a result, children's DNA samples are often stored -- sometimes indefinitely.

Some parents are creeped out by the Orwellian image of the government keeping babies' DNA without their parents' knowledge or consent and they're filing lawsuits. Members of the Texas Legislature felt the same chill down their spines last year.
They passed a law that allows doctors in the state to keep and use the DNA samples for research, but requires parents be informed. The law also gives parents the option of having their children's leftover blood samples destroyed after screening.

Doctors have 60 days to destroy the blood samples after receiving the official notification form from the parents.

Most states don't have such laws. CNN reports DNA samples are still stored indefinitely in Florida. And genetic testing continues to be done without parents' consent, Brad Therrell, the director of the National Newborn Screening & Genetics Resource Center, tells CNN.

Annie Brown of Mankato, Minn., tells CNN she had no idea the government planned to keep her newborn daughter's DNA.

"We were appalled when we found out," Brown, a registered nurse, tells CNN. "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."

DNA samples are kept so that tests can be repeated if necessary, according to the state of Minnesota's Web site. The samples are also used for medical research and to help parents identify a missing or deceased child.

Art Caplan, a bioethicist at the University of Pennsylvania, tells CNN he understands why states don't play Mother May I when it comes to screening babies.

"It's paternalistic, but the state has an overriding interest in protecting these babies," he says.

However, he adds, storing DNA for long periods is harder to defend.

"I don't see any reason to do that kind of storage," Caplan tells CNN. "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."

CNN reports genetic testing for newborns started in the 1960s. Physicians tested for diseases and conditions that, if undetected, could kill a child or cause severe problems. Since then, physicians argue, the screening has helped save countless newborns.

Over the years, CNN reports, many other tests were added to the list. Now states mandate that babies be tested for anywhere between 28 and 54 different conditions. DNA samples are stored in state labs from three months to who-knows-when.

Therrell tells CNN parents don't need to worry about the privacy of their babies' DNA.

"The states have in place very rigid controls on those specimens," he says. "If my children's DNA were in one of these state labs, I wouldn't be worried a bit."

But Brown tells the network she still feels ill at ease.

"I know the government says my baby's data will be kept private, but I'm not so sure," she says. "I feel like my trust has been taken."

Related: Newborn test for cystic fibrosis

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AdviceMama Says:
Start by teaching him that it is safe to do so.