Health alert: California baby blood stored in genetic warehouse - CBS News 8 - San Diego, CA News Station - KFMB Channel 8

Health alert: California baby blood stored in genetic warehouse

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SAN FRANCISCO (KPIX 5) — This may come as a surprise to California natives in their 20s and early 30s: The state owns your DNA. Every year about four million newborns in the U.S. get a heel prick at birth, to screen for congenital disorders, that if found early enough, can save their life.

Danielle Gatto barely remembers the nurse even mentioning  a test performed on her two daughters. “I don’t think that any woman is in a state of mind to sit down and start studying up on the literature they send you home with,” she said.

But later she was shocked to find, her daughters’ leftover blood was not thrown away. “The state collects the cards and then uses them in a database,” she said. The information is buried on page 12 of the brochure about the Newborn Screening Program that hospitals give parents of newborns before they go home.

Turns out a non-descript office building in Richmond contains the DNA of every person born in California since 1983. It’s a treasure trove of information about you, from the color of your eyes and hair to your pre-disposition to diseases like Alzheimer’s and cancer.

Using these newborn blood spots for research, the state is able to screen babies for 80 hereditary diseases. But the California Department of Public Health (CDPH) is not the only agency using the blood spots.

Law enforcement can request them. Private companies can buy them to do research – without your consent. “Everybody has a right to make an informed decision. That is not for the state to decide for them,” said Gatto.

The California Department of Public Health said parents can request their children’s blood spot card destroyed . And CDPH says the blood spots are de-identified and can’t be tracked back to the child.

But Yaniv Erlich with Columbia University and the New York Genome Center said there’s no way to guarantee that. His research demonstrated how easy it is to take anonymized DNA, cross-reference it with online data and connect it to a name. “You need to have some training in genetics, but once you have that kind of training the attack is not very complicated to conduct,” he said.

But Erlich doesn’t see the privacy risk as a drawback. “I want to stress that sharing genomic information is highly important, to advance biomedical research,” said Erlich. “This is the only way that we can help families with kids that are affected by these devastating genetic disorders.”

Such was the case with Luke Jellin, diagnosed at birth with a rare metabolic disease, thanks to a heel prick. “Had he not been tested he would have been severely brain damaged, possibly would have had heart and kidney problems,” said his mother Kelly Jellin, a member of the Save Babies Through Screening Foundation. She’s thankful the state stored the blood spots of millions of babies born before hers. “If blood spots hadn’t been saved, they wouldn’t have been able to make the test that saved my child’s life,” she said.

But Gatto thinks the state should have to at least ask her consent before storing and selling her daughters’ DNA. “We are at the beginning of a frontier of so much genetic research, there is no knowing at this point in time what that info could be used for,” said

Gatto. ‘The worst thing as a parent is to think that a decision that you are making today may negatively affect your children down the road.”

Gatto ended up requesting that her child’s blood spots be destroyed. Meanwhile, her husband – state Assemblyman Mike Gatto – introduced a bill this year that would have required signed consent on newborn screening. Opposition from the state and the industry killed it.

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The California Department of Public Health provided the following answers to questioned emailed by CBS News 8:

QUESTION: Why isn’t a signature of the mother required for a baby's blood to be included in the database?

CDPH Response: Healthcare providers at California’s many birthing facilities give parents informational brochures about opting-out of blood spot storage. Since parents of newborns have many other concerns shortly after birth, this procedure allows them to make that decision at any time, without pressure. Parents can then contact the California Department of Public Health (CDPH) and learn more about their options from knowledgeable professionals who are directly involved with the Newborn Screening Program.

The information for parents about storage and use of blood spots is provided on pages 12 and 13 of the Newborn Screening brochure.

In addition to being available on the Internet in multiple languages, healthcare providers give the brochure to parents prenatally and at birthing centers and hospitals.

QUESTION: Why is this baby blood database so important for researchers? Specifically, how does it help researchers?

CDPH Response: This resource is valuable to researchers for improving screening of newborns and developing new screening tests, and for answering other important questions about diseases of children and women. California’s contribution is unique because of its large size and culturally, geographically, and genetically diverse population; the number and quality of specimens collected and preserved annually; the number of historic specimens; and linkage with statewide prenatal and newborn screening program data, birth defects data, and other population databases.

QUESTION: How is access by law enforcement regulated?

CDPH Response: Access by law enforcement without the expressed written consent of the parent (or the individual if he/she has reached the age of 18) requires a court order.

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