New bill would give California parents more control over whether state can store their kid's DNA
SACRAMENTO - Should you have the right to know that the state is storing your child's DNA and that researchers or law enforcement may use it without your consent?
This is an issue Julie Watts has been investigating for years, and today, parents are one step closer to getting that right.
Most parents have no idea that California has been storing a DNA sample from every baby born here since the 80s. A bill that passed out of the state senate judiciary committee this week could change that.
It's been a hard-fought issue since we first started reporting on the state's newborn biobank over a decade ago. But following a few amendments, for the first time, the medical community removed their opposition to this bill.
You see, nearly every baby born in the US gets a heel prink shortly after birth. Their newborn blood fills 6 spots on special card used to test the baby for dozens of genetic disorders that, if treated early enough, could prevent severe disabilities...even death.
The test itself is crucial and potentially lifesaving. But it's what happens after that has some concerned. In California, the leftover bloodspots become property of the state and may be used purchased by researchers without your knowledge or consent.
Public records we obtained in 2010 revealed the bloodspots were also used by law enforcement. We found at least five search warrants and four court orders for identified bloodspots -- and that was before the golden state killer case made genetic geology a common law enforcement tool...
At least one cold case was more recently solved with the help of newborn blood spots. But when we asked the California Department of Public Health (CDPH) for an updated list of research and law enforcement requests, but they denied our request, telling us the agency is no longer tracking that information like it used to, so it's not required to create a record, telling us who has access to our children's DNA.
Julie: Were you aware that the state was storing your child's DNA?
Moms: No
Julie: Do you think you should have been aware?
Moms: Absolutely.
A 2018 statewide CBS News poll found that the majority of new parents did know about the lifesaving test. Three quarters (of new parents) had no idea the state was storing their baby's leftover bloodspots after the required test genetic test was complete.
Under this new legislation authored by State Senator Nguyen, for the first time, parents would have the option to out of storage or research at the time the baby's sample is taken. They would sign a form acknowledging they know about their options at least four weeks before the baby is born. .
Notably, privacy lawsuits in other states forced them to destroy their stockpile of newborn bloodspots stored without consent. This bill could protect California's biobank from the same fate.
California has the largest stockpile of bloodspots in the nation. All of the bloodspots are being held without consent.
Previous versions of the bill required parents to opt in to storage instead of opting out -- something the medical community opposed.
This version also prohibits law enforcement access to the DNA. It moves on to senate appropriations committee later this month.