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.

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.

…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

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.”

“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.

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.

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?”

State law says parents should know — they don’t

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.

However, the newborn screening law does say that state may store samples of the mother’s prenatal blood, which is taken early in the pregnancy, but only if the mother opts in.

Calif. moms opt in to prenatal

A Calif. opt-in solution

What next? 

So the questions remain: Should parents have the right to know that their child’s DNA will be stored indefinitely in a state-run biobank and may be available to law enforcement? Should the state have to confirm that parents are informed of their rights before it stores and sells the child’s DNA? Who has the power to make that happen?

Karen Smith, appointed by Governor Brown, is the current Director of the Department of Public Health. She has the power to adopt new regulations.

Though, for a more permanent fix, lawmakers in Sacramento would need to pass new legislation.

We’ve shared our findings with several state lawmakers on the Assembly Privacy Committee.  Many were shocked to learn that the state was storing DNA samples from every baby born in the state and selling them to outside researchers without parents’ knowledge or consent.

So far, however, none have shown any interest in giving parents the right to opt out of storage before the child is born, or even requiring the state to confirm parents are informed before storing their baby’s blood indefinitely.

Full article: DNA of every baby born in California is stored. Who has access to it? (MSN)

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