DNA data from California newborn blood samples stored, and sold to third parties

(KPIX 5) – This may come as a surprise to Native Californians in their twenties and early thirties: the state owns your DNA.

Check out the 2018 update of this story here:
The California Biobank stores each child’s DNA. Who else has access?

Each year, four million newborns in the United States receive a heel prick at birth, to screen for congenital disorders, which could save their lives if found early enough.

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

But she was later shocked to find that the remaining blood of her daughters had not been scattered. “The state collects the cards and then uses them in a database,” she said. The information is buried on page 12 of the brochure for the newborn screening program hospitals provide to parents of newborns before they go home.

It turns out that a nondescript office building in Richmond has 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 predisposition to diseases like Alzheimer’s and cancer.

Using these newborn blood spots for research, the state is able to screen infants for 80 genetic diseases. But the California Department of Public Health (CDPH) isn’t the only agency using bloodstains. Law enforcement can ask them. Private companies can buy them for research – without your consent. “Everyone has the right to make an informed decision. It is not for the state to decide on their behalf,” Jato said.

CDPH declined a request for an interview and did not explain why it was not seeking permission to sell children’s bloodstains. But she said that parents can destroy her https://www.cdph.ca.gov/programs/nbs/Pages/default.aspx . The CDPH says the bloodstains have been identified and cannot be traced back to the child.

But Yaniv Ehrlich of Columbia University and the New York Genome Center said there was no way to guarantee that. His research showed how easy it is to take an unidentified DNA, refer it to online data, and associate it with a name. “You need some training in genetics, but once you have that kind of training, executing the attack isn’t very complicated,” he said.

But Ehrlich does not see privacy risks as a flaw. In fact, I just launched DNA.land, a mass database where people can voluntarily donate their genetic blueprints so that everyone can benefit. “I want to stress that sharing genetic information is very important, in order to advance biomedical research,” Ehrlich said. “This is the only way we can help families with children affected by these devastating genetic disorders.”

Such was the case with Luke Jellin, who was diagnosed at birth with a rare metabolic disease, thanks to a heel prick. His mother, Kelly Gillen, who is a member of Save the children through the examination institution. She is grateful to the state in which the blood spots were stored for the millions of babies born prematurely. “Had the blood spots not been preserved, they would not have been able to do the test that saved my child’s life,” she said.

But Jatto believes that the state should at least seek her consent before storing and selling her daughters’ DNA. “We’re at the beginning of the frontiers of a lot of genetic research, and we don’t know at this time what this information might be used for,” Gatto said. “The worst thing as a parent is thinking that the decision you make today may negatively affect your children in the future.”

Gato ends up ordering that her child’s bloodstains be destroyed. Meanwhile, her husband – State Assemblyman Mike Gatto – introduced a bill this year that would have required signed consent for newborn screening. The opposition killed the state and industry.

For more from reporter Julie Watts on the topic, check out her personal blog

Check out the 2018 update of this story here:
The California Biobank stores each child’s DNA. Who else has access?

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