State of California SECRETLY Collecting Blood/DNA of ALL Babies Since 1983

Have a baby in California and the State of California will take some of its blood—and catalog its DNA. No permission, no court order. Oh, this has been going on since 1983. Then we find out the State can SELL this information to private firms. No telling how has your private information. Yes, we should worry about the NSA and the Internet—but the State of California is rivaling the NSA for THEFT of private information.

“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.

Where is the ACLU trying to stop this? Why hasn’t the Attorney General kamala Harris demanded the end of this unwarranted invasion of babies? When will the mainstream media start exposing this? Will someone is Sacramento author a bill to end this practice and to destroy the DNA/blood taken without permission?

baby-voting

DNA Data From California Newborn Blood Samples Stored, Sold To 3rd Parties

By Julie Watts, CBS Bay Area, 11/9/15

This might 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 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.

About Stephen Frank

Stephen Frank is the publisher and editor of California Political News and Views. He speaks all over California and appears as a guest on several radio shows each week. He has also served as a guest host on radio talk shows. He is a fulltime political consultant.

Comments

  1. This is so corrupted . . . .

    Where to begin?

  2. “First they came for the Socialists, and I did not speak out—
    Because I was not a Socialist…”

  3. This is amazing. Will this change our healthcare! Can they use this to decide on what treatments?
    Wow

  4. A legislator did author a bill in the 2015 term, Democrat Assemblymember Mike Gatto authored AB170. He thought it the best way to alert parents to what he had only recently discovered. The bill was opposed by the Chair of the Health Committee severely watered down and finally held in committee, thereby killing it.

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