Did your newborn undergo genetic testing? The answer is yes, even without your consent, if your child was born in a hospital or birthing center. Even babies born at home often go in for basic testing, like PKU, at two days old (mine did).
What parents don’t know, beyond the results of such genetic testing, is that many states keep your child’s DNA on file indefinitely without your consent.
I try not to be paranoid, but I really wonder why the government feels the need to store children’s DNA without parental consent. From state to state, policies vary, but what they have in common is that most parents are not informed. According to CNN:
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…
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.”
Since genetic testing is mandated by law, often parents are not aware the tests have even occurred after their child is born. What concerns parents is what states do with this information, and as CNN, explains, health insurance pay for the tests and thus have access to the results. CNN continues:
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.”
By consulting this chart, I found out that my state of California keeps children’s DNA samples indefinitely. Testing and storing DNA without parental consent just feels like Big Brother is watching. I am thankful my child’s name is not attached to any samples used for research, and I probably would have agreed to such a use given a choice; however, I believe as parents we should be told our states are storing our children’s genetic information forever. I can’t help but suspect such information could or would be used in criminal situations. I’m not sure how I feel about that.