California can share your baby's DNA sample without permission, but new bill could force state to publicly reveal who they're giving it to
Genealogy companies like Ancestry.com and 23andMe have to get your permission before they store, use, or share your DNA, under the Genetic Information Privacy Act. However, the California Department of Public Health doesn't have to. In fact, the agency has been storing DNA samples from every baby born in California since the 1980s.
Researchers can purchase those samples for state-approved studies and law enforcement can access them with a court order, but state agency officials recently refused to provide CBS News California with a list of recent law enforcement and research requests for newborn bloodspots.
After more than a decade of CBS reporting on the biobank, this is the first time California officials have refused to reveal to us who has access to California's newborn bloodspots. Under previous administrations, the agency regularly provided that information under the California Public Records Act.
CONTINUING COVERAGE: Newborn Blood Spot Privacy Concerns
Keep in mind, if you're even related to someone born in California since 1983, thanks to genetic genealogy, portions of your DNA are in the biobank too, and can likely be used to identify you.
While California's Newborn Genetic Biobank is undoubtedly saving lives, the appearance of state secrecy is raising concerns. In response, some California lawmakers are pushing for transparency, but they face an uphill battle at the State Capitol. (To learn more about newborn blood storage, and how to opt out, click here.)
For some, newborn DNA testing is a lifesaver
"He was a very cute, very adorable baby," Ronnie's dad said, as he described seeing his son for the first time, "and perfectly healthy."
At the time, the new father (who for medical privacy reasons asked us not to use full names in this report) didn't think much about what happened next. Like every baby born in the state, Ronnie got a heel prick shortly after birth. That blood filled six spots on a special card used to test babies for dozens of disorders that, if treated early enough, could prevent severe disabilities or death.
A couple of days after taking their seemingly healthy boy home from the hospital, they got a call from the local pediatrician, who said the child was diagnosed with "no immune system at all." They learned Ronnie's heel prick revealed that he had a rare genetic disorder called SCID, also referred to as "bubble boy disease" after David Vetter, who lived his life in a bubble in the '70s before dying at age 12.
Ronnie's first infection could have killed him, but thanks to research, the disease is no longer a death sentence. Ronnie was rushed to UCSF Medical Center where he received lifesaving gene therapy. That's where he met Dr. Jennifer Puck, who created the test that saved Ronnie's life.
"I could never have developed a newborn screening test for SCID if we hadn't had stored dried blood spots," Puck said.
Doctors only need a few of the baby's blood spots for their own lifesaving genetic test, but the rest becomes the property of the state and can be purchased by outside researchers.
While newborn bloodspots had been used in research for years, the SCID test was the first to be developed using extracted DNA from bloodspots stored in California's massive newborn genetic biobank. The state doesn't extract or sequence the DNA from bloodspots, they store the physical bloodspot samples, which researchers can purchase for state-approved studies and extract or sequence the DNA themselves.
"You have to go through a scientific review to say, is this a worthwhile project," Puck explained.
Many parents don't know the state is collecting newborn DNA
California has amassed what's believed to be the largest stockpile of newborn bloodspots in the country. It is one of the few states that is still storing every baby's bloodspots indefinitely, without first getting parents' consent.
Therein lies the concern. Back in 2018, CBS News California randomly selected six new moms to ask what they knew about the newborn genetic testing program. When asked whether they knew the state was storing their children's DNA, all said they did not; when asked if they felt they should have been made aware, they agreed they should have.
"I didn't know there was repository of every baby born in the state," one concerned mother said. Another added, "There just should be accountability and transparency."
Some states allow parents to opt-in to storage or give informed consent. California automatically stores your baby's genetic material, then sends you home from the hospital with a pamphlet that points you to a website where you can request that they destroy the sample. But first, you'd have to know they were storing it in the first place.
"I feel like that's something that should have been discussed with us in person," one concerned mother said.
"Everyone who came into our room gave us another pamphlet," another added.
A CBS News-Survey USA news poll found three-quarters of new parents had no idea the state was storing their baby's leftover bloodspots indefinitely or that they had the right to have their child's sample destroyed.
"Blood is intrinsically personally identifiable," one mother pointed out.
Could privacy violations, lawsuits threaten California's biobank?
Public records CBS News California obtained from the California Department of Public Health in 2010 revealed that, in addition to research, newborn genetic bloodspots are also used by law enforcement.
Our reporting found at least five search warrants and four court orders for identified blood spots, and that was before the Golden State killer case made genetic geology a common law enforcement tool.
Since then, we know at least one cold case was recently solved with the help of California's newborn blood spots.
A lawsuit alleges police subpoenaed a 9-year-old's newborn samples from New Jersey's biobank to link his father to a cold case rape before the child was born. And Texas reportedly provided race-specific blood spots to the federal government to build a DNA database.
But when we recently asked California's health department for an updated list of research and law enforcement requests, the agency denied us, saying it "is no longer tracking" that information like it used to and it's "not required to create a record" telling us who has access to California's stored DNA:
"Unfortunately, GDSP is unable to provide you the information as requested. Previously, GDSP provided you with an existing spreadsheet of research studies... GDSP has since moved to a new computer program for collecting this data and is no longer tracking research studies using the spreadsheet and the table. Pursuant to Government Code section 6252, subdivision (e), and established case law, a public agency is not required to create a record that does not exist at the time of the PRA request. (See Haynie v. Superior Court (2001) 26 Cal.4th 1061, 1075; Sander v. Superior Court (2018) 26 Cal.App.5th 651, 665-666.)"
For years everyone from privacy advocates to lawmakers to genetic detectives have warned California's secrecy could ultimately harm trust in the biobank.
"People have the right to choose how their DNA is used and how their children's DNA is used," said Cece Moore, a genetic detective.
Texas is one of several states that had to destroy their bloodspots after being sued for storing them without consent. It was a devastating blow to the research community and many worry that California's biobank could be next.
"I think we need to find ways that parents can consent without harming research," Puck said.
Medical community opposed allowing opt-ins in the past
The medical community has historically opposed allowing parents to opt into storage, for a number of reasons.
"If you required consent, a lot of people would say yes, and some people would say no," explained Puck. "And the people who say no, we don't know if that's a biased sample. And so that would skew the biobank."
Puck adds there is also a possibility that the parent could say no and then later really come to regret that decision.
However, the California Constitution guarantees the right to "pursue and obtain privacy" and state law "prohibits health care providers from sharing, selling, or using patient medical information without consent."
Legal experts involved in lawsuits in other states tell us that it's only a matter of time before California's biobank is taken to court. If the state proactively allowed consent, they say it could ultimately help save the biobank.
Despite support, why has newborn DNA legislation stalled?
The Texas Law Review cited our ongoing reporting on this issue and so did legislative analysts when our reporting led to a bill last year that would have let parents opt out of storage or research before the samples were stored. Even the powerful medical lobby removed their opposition to the bill after the author made significant changes.
The bill passed three different committees, at least one with a near-unanimous vote. Then the bill quietly died in January behind closed doors in the Senate suspense file. Why? Money and politics. Any bill that is estimated to cost more than $150,000 is sent to the "suspense file" where, in a budget deficit year, many bills go to die.
The state health department claimed it would cost roughly $4 million to implement, plus ongoing costs of over $1 million a year, to give parents the right to opt out of storage or research before the state automatically stores their child's DNA.
An independent appropriations analysis of a similar bill in 2015 estimated $120,000 to implement that bill with half a million in ongoing costs.
Neither California's health department nor the Senate Appropriations Committee could provide an accounting or evidence of the estimated costs. But maybe more importantly, the bill should not have cost taxpayers anything because research fees are supposed to pay for the program.
Still, the Appropriations Committee chair has the power to kill any bill they want to by holding it in the "suspense file," where it automatically dies without a vote. Then-chair, Glendale Senator Anthony Portantino, decided to do just that, ultimately killing the bill before the rest of the senate got a chance to vote.
The appropriations analysis of the bill clearly states that CDPH's estimated costs would be covered by the Genetic Disease Testing Fund (GDTF), not the general fund. State regulation requires the biobank program pay for itself through the (GDTF), by charging researchers to use the bloodspots.
The committee analysis does cite potential additional "(c)osts to local registrars for administration," however, regulations are clear: "It is the intent of the Legislature that the program... be fully supported from fees collected..."
We asked the CDPH Office of Communications to confirm that any costs related to the bill would have been covered by increased fees charged to researchers. The agency did not respond. However, we did receive an unsolicited notice that a California Public Records Act request had been submitted on our behalf. Under state law, that gives the agency two weeks to decide if it will answer our questions.
We also asked the Appropriations Committee and former chair Asm. Portantino, to clarify why they chose to let the bill die in the suspense if the bill would not have created any additional costs to the state?"
They did not respond to repeated emails.
Two new California bills introduced in 2024
Privacy advocates are at it again with two new bills this year.
Prompted by our recent reporting, SB 1099 would force the state to publicly reveal, among other things, who's using California's newborn bloodspots and why.
The other, SB 1250, would amend California's Genetic Information Privacy Act to require the state government to follow the same rules as consumer genetic testing companies and get consent before using or sharing your genetic data.
"Consent is definitely a good option," said Ronnie's dad, who supports the biobank and consent.
Genetic data from those stored blood spots has undoubtedly saved thousands of babies, including Ronnie's, who is thriving — outside of a bubble.