DNA Data From California Newborn Blood Samples Stored, Sold To 3rd Parties
DNA Data From California Newborn Blood Samples Stored,
Sold To 3rd Parties
November 9, 2015 11:49 PM By Julie Watts
(KPIX 5) — 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 www.dna.land.com, 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. 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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