Newborn DNA Blood Spots Stored and Sold

Photo of newborn baby’s feet by Renee Schiavone, Patch Staff

The state of California takes blood samples from every baby born in the state. The newborn’s heel is pricked, and the tiny blood drops are placed on cards for genetic testing. The blood is screened for 80 hereditary diseases. The results can be life saving.

Luke was diagnosed at birth with a rare metabolic disease that was discovered with the heel prick test.

“Had he not been tested, he would have been severely brain damaged, possibly would have heart and kidney problems,” said mom Kelly Jellin.

But after the testing is complete, the card is not destroyed.The state saves them - every single card since 1983 is stored in a warehouse in Richmond, with the information also stored in a database.

That database isn’t restricted to your personal doctors. Law enforcement can access the data. And biomedical companies doing research can buy it.

The California Department of Public Health told KPIX that the DNA is de-identified so it can’t be tracked back to the child.

Not true, according to Yaniv Erlich with Columbia University and the New York Genome Center, whose research shows that anonymous DNA can be reconnected with a name using online data, “You need to have some training in genetics, but once you have this sort of training, the track is not very complicated to conduct.”

But like Kelly Jellin, Erlich emphasizes the importance of storing this data, “I want to stress that sharing genomic information is highly important to advance biomedical research. This is the only way that we can help families with kids that are affected by these devastating genetic disorders.”

“If the blood spots hadn’t been saved, they wouldn’t have been able to make the test that saved my child’s life,” Jellin agrees.

Not so fast, says Daneille Gatto. The mother of two is troubled by the state’s ability to store information on her daughters, and either share it or sell it without her consent, “That’s not for the state to decide.”

Gatto requested that the state destroy her daughter’s information.

“We’re at the beginning of a frontier of so much genetic research. There’s no knowing at this point in time what that information could be utilized for in the future.”

Gatto’s husband, Southern California Assemblyman Mike Gatto, introduced a bill this year that would have required informed consent from parents. It was defeated.

Like Danielle Gatto, every parent has the right to request that their child’s card be destroyed.