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,
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.
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.
It’s estimated that newborn screening leads to a potentially life-saving early diagnosis each year for 5,000 to 6,000 children nationwide.
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.
“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.
New mom Nida Jafri chimed in, “There should be accountability and transparency on what it’s being used for.”
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.
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.
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.
“De-identified DNA”
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.
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.
According to the Department of Public Health, it’s not hiding anything. The agency points to page 13 of the Newborn Screening brochure which does disclose that the blood spots are stored.
Required disclosure
State regulations say that parents are supposed to get the full 14 page pamphlet twice, once before their due date, and again in the hospital before the heel prick test.
But in practice, most parents say they didn’t even see the pamphlet until after the test, if they got it at all.
State law
In California, the newborn screening law doesn’t actually authorize the state to store a child’s leftover blood spots after the test, or give it to outside researchers, it only authorizes the life-saving genetic test itself.