DNA of every baby born in California is stored. Who has access to it?
SAN FRANCISCO -- You probably know where your Social Security card, birth certificate and other sensitive information is being stored, but what about your genetic material? If you or your child was born in California after 1983, your DNA is likely being stored by the government, may be available to law enforcement and may even be in the hands of outside researchers, CBS San Francisco's Julie Watts reports.
Like many states, California collects bio-samples from every child born in the state. The material is then stored indefinitely in a state-run biobank, where it may be purchased for outside research.
State law requires that parents are informed of their right to request the child's sample be destroyed, but the state does not confirm parents actually get that information before storing or selling their child's DNA.
KPIX has learned that most parents are not getting the required notification. We've also discovered the DNA may be used for more than just research.
In light of the Cambridge Analytica-Facebook scandal and the use of unidentified DNA to catch the Golden State Killer suspect, there are new concerns about law enforcement access, and what private researchers could do with access to the DNA from every child born in the state.
The Lifesaving Test
It all begins with a crucial and potentially lifesaving blood test.
The Newborn Genetic Screening test is required in all 50 states, and is widely believed to be a miracle of modern medicine.
Nearly every baby born in the United States gets a heel prick shortly after birth. Their newborn blood fills six spots on a special filter paper card. It is used to test baby for dozens of congenital disorders that, if treated early enough, could prevent severe disabilities and even death.
It's estimated that newborn screening leads to a potentially life-saving early diagnosis each year for 5,000 to 6,000 children nationwide.
The California Department of Public Health reports that from 2015-2017 alone, the Newborn Screening test diagnosed 2,498 babies with a "serious congenital disorder that, if left untreated could have caused irreparable harm or death."
But, unless you or your child is diagnosed with one of these disorders, the test is often lost in the fog of childbirth.
We randomly selected six new moms and asked what they knew about their child's genetic test.
Three of the moms remembered the heel prick, while the other three say they think they knew about the test. But, like most parents, none knew what happened to their baby's leftover blood spots after the test.
They were shocked when KPIX reporter Julie Watts explained it to them.
Your rights after the test
The lab generally only needs a few of the blood spots for the baby's own potentially lifesaving genetic test. They use to collect five blood spots total from each child in California, they've now increased that to six.
Some states destroy the blood spots after a year, 12 states store them for at least 21 years.
California, however, is one of a handful of states that stores the remaining blood spots for research indefinitely in a state-run biobank.
Even though the parents pay for the lifesaving test itself, the child's leftover blood spots become property of the state and may be sold to outside researchers without the parent's knowledge or consent.
"I just didn't realize there was a repository of every baby born in the state. It's like fingerprints," new mom Soniya Sapre responded.
Amanda Feld, who had her daughter 15 months ago, was concerned in light of recurring data breaches. "We know that companies aren't very good at keeping data safe. They try," she said.
New mom Nida Jafri chimed in, "There should be accountability and transparency on what it's being used for."
"Blood is inherently or intrinsically identifiable,"added Sapre.
Some states allow parents to opt-in or give informed consent before they store the child's sample.
In California, however, in order to get the potentially lifesaving genetic test for your child, you have no choice but to allow the state to collect and store the remaining samples.
You do have the right to ask the biobank to destroy the leftovers after the fact, though the agency's website states it "may not be able to comply with your request."
You also have the right to find out if your child's blood spots have been used for research, but you would have to know they were being used in the first place and we've discovered that most parents don't.
Samples used to save more lives
Dr. Fred Lorey, the former director of the California Genetic Disease Screening Program, explained that blood spot samples are invaluable to researchers.
"They're important because these samples are needed to create new testing technology," Lorey said.
He explained that they're primarily used to identify new diseases and improve the current tests, ultimately saving more babies
With nearly 500,000 births a year, California's biobank is, by far, the largest and is crucial for research nationwide.
According to the Department of Public Health, more than 9.5 million blood spot samples have been collected since 2000 alone. The state has stored blood spots since 1983.
As a result, California can now test newborns for more than 80 different disorders, more than any other state. The standard panel nationwide is around 30 disorders.
But researchers with the California Genetic Disease Screening Program aren't the only ones with access to samples stored in the biobank.
Blood spots are given to outside researchers for $20 to $40 per spot.
Regulations require that the California Genetic Disease Screening Program to be self-supporting.
"It has to pay for itself," Lorey noted. Allowing outside researchers to buy newborn bloodspots helps to recoup costs.
According to biobank records, the program sold about 16,000 blood spots over the past five years, totaling a little more than $700,000. By comparison, the program reported $128 million in revenue during the last fiscal year alone, mostly generated by the fees parents pay for the test. Parents are charged around $130 on their hospital bill for the Newborn Screening Test itself.
Making money off your DNA
But while the state may not be making money off your child's DNA, Lorey admitted that there is the potential for outside researchers to profit off your child's genetic material.
"Do any of those studies result in something that the company can make money from?" reporter Julie Watts asked Lorey in a recent interview. "Could they create a test or treatment that they ultimately profit from?"
"Theoretically, yes," Lorey admitted. "I'm not aware of any cases that that's happened because virtually all, not all, of these researchers that have made requests are scientific researchers."
He explained that researchers who request the spots must meet specific criteria. Their studies must first be approved by a review board. They're also supposed to return or destroy remaining blood spot samples after use.
However, privacy advocates point to the Cambridge Analytica-Facebook scandal where third-party researchers were supposed to destroy data, but instead used it for profit – and untimely to attempt to influence a presidential election.
Watts pressed Lorey on that point.
"So there is no possibility a researcher may request blood spots for a specific research experiment … but then keep blood spots without the department's knowledge to be used for other purposes?" she asked.
"I want to say no" he said. "But I'm not ready to say no because I know how humans can be sometimes."
However, Lorey stressed that the blood spots cards, stored in the state biobank, are "de-identified." There is no name or medical information on the card, just the blood spots and a number.
Lorey explained the identifying information is stored in a separate building and after a few years is microfiched so it's not even kept on a server. Samples do need to be re-identified for various reasons, but Lorey says, in those cases, parents are notified.
And to be clear, he stressed, there is also no genome database. The state does not sequence or extract the DNA from the blood spots collected, although a researcher might, depending on the study.
Privacy advocates, like Consumer Watchdog's Jamie Court insist DNA is inherently identifiable.
"There is no such thing as de-identified DNA," Court said. "The very nature of DNA is that it identifies you and your genetic code specifically."
Court points to the recent case of the Golden State Killer. Investigators used public ancestry sites to identify a murder suspect using decades-old unidentified DNA from a crime scene.
And we've learned, researchers aren't the only ones with access to the blood spots.
Law enforcement access
A public records request revealed coroners often use blood spots to identify bodies, and at least one parent requested blood spots to prove paternity.
Law enforcement also can — and does — request identified blood spots. We found at least five search warrants and four court orders, including one to test a child's blood for drugs at birth.
According to the Department Of Public Health, "Only a court order can provide a third-party (including law enforcement) access to an identified stored specimen without parental consent."
"I think the storage of DNA for purposes other than medical research without informed consent clearly is violating a duty and a trust that the state has to the public," Court said. "What are they trying to hide?"
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