DNA Data From California Newborn Blood Samples Stored, Sold To 3rd Parties
(KPIX 5) -- This might come as a surprise to California natives in their 20s and early 30s: The state owns your DNA.
SEE A 2018 UPDATE TO THIS STORY HERE:
California Biobank Stores Every Baby's DNA. Who Else Has Access?
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 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 CDPH turned down a request for an interview and wouldn't explain why it doesn't ask permission to sell babies' blood spots. But it said parents can have them destroyed https://www.cdph.ca.gov/programs/nbs/Pages/default.aspx . 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. In fact, he just launched DNA.land, a crowd-sourced database where people can voluntarily donate their genetic blueprints so that everyone can benefit. "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.
For more from reporter Julie Watts on the topic, check out her personal blog