California Newborn DNA Database Shocks Parents
By CBS TV-13, SACRAMENTO, CA
May 14, 2018
SACRAMENTO (CBS13)– DNA is back in the spotlight, cracking cold cases. But questions are being raised after the state spent decades collecting the DNA of infants without parents realizing it.
California has been collecting newborn blood samples since 1983.
Many parents were shocked to hear their children’s blood is being stored in a state database, and possibly even sold to outside researchers. Pricking the toes newborns, to test their blood for certain disorders. The remaining blood becomes “property of the state,” and could be shared with outside researchers.
“I feel like that’s something that should have been discussed with us, in person, not on whatever page in a document,” said one mom.
The state tells new parents about it, hidden on page 13 of a 14-page pamphlet, and California can hold onto those samples indefinitely.
“These samples are needed to create new testing technology,” said Fred Lorey.
Lorey used to run California’s Genetic Disease Screening Program and says the blood spots are de-identified.
That means no name or medical information, just the blood and a number.
“There is no such thing as de-identified DNA,” said Jamie Court, head of Consumer Watchdog. Court points to the arrest of Joseph DeAngelo, the suspected East Area Rapist, reportedly identified when his DNA was matched with a profile on a public ancestry site.
“There should be a state audit of what’s happened with this program and the types of uses for this DNA, and there should be a recommendation to the legislator,” Court added.
California is not saying exactly what happens with these blood samples after reaching the state’s bio-lab, but parents can request the state destroy their child’s blood samples.
“The burden’s on you, a sleepless new mom, to remember to call them, and then follow up,” said another mom.
Nearly every state requires the blood tests. But the difference is other states destroy it, some after a year.
California is one of four states storing blood spots indefinitely in a state-run “bio-bank”.