Suzanimal
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California Biobank Stores Every Baby’s DNA. Who Else Has Access?
SAN FRANCISCO (KPIX 5) — You probably know where your Social Security card, birth certificate and other sensitive information is being stored, but what about your genetic material?
If you or your child was born in California after 1983, your DNA is likely being stored by the government, may be available to law enforcement and may even be in the hands of outside researchers.
Like many states, California collects bio-samples from every child born in the state. The material is then stored indefinitely in a state-run biobank, where it may be purchased for outside research.
State law requires that parents are informed of their right to request the child’s sample be destroyed, but the state does not confirm parents actually get that information before storing or selling their child’s DNA.
KPIX has learned that most parents are not getting the required notification. We’ve also discovered the DNA may be used for more than just research.
In light of the Cambridge Analytica-Facebook scandal and the use of unidentified DNA to catch the Golden State Killer suspect, there are new concerns about law enforcement access, and what private researchers could do with access to the DNA from every child born in the state.
...
The lab generally only needs a few of the blood spots for the baby’s own potentially lifesaving genetic test. They use to collect five blood spots total from each child in California, they’ve now increased that to six.
Some states destroy the blood spots after a year, 12 states store them for at least 21 years.
California, however, is one of a handful of states that stores the remaining blood spots for research indefinitely in a state-run biobank.
Even though the parents pay for the lifesaving test itself, the child’s leftover blood spots become property of the state and may be sold to outside researchers without the parent’s knowledge or consent.
“I just didn’t realize there was a repository of every baby born in the state. It’s like fingerprints,” new mom Soniya Sapre responded.
...
Some states allow parents to opt-in or give informed consent before they store the child’s sample.
In California, however, in order to get the potentially lifesaving genetic test for your child, you have no choice but to allow the state to collect and store the remaining samples.
You do have the right to ask the biobank to destroy the leftovers after the fact, though the agency’s website states it “may not be able to comply with your request.”
You also have the right to find out if your child’s blood spots have been used for research, but you would have to know they were being used in the first place and we’ve discovered that most parents don’t.
http://sanfrancisco.cbslocal.com/2018/05/08/california-biobank-stores-baby-dna-access/
SAN FRANCISCO (KPIX 5) — You probably know where your Social Security card, birth certificate and other sensitive information is being stored, but what about your genetic material?
If you or your child was born in California after 1983, your DNA is likely being stored by the government, may be available to law enforcement and may even be in the hands of outside researchers.
Like many states, California collects bio-samples from every child born in the state. The material is then stored indefinitely in a state-run biobank, where it may be purchased for outside research.
State law requires that parents are informed of their right to request the child’s sample be destroyed, but the state does not confirm parents actually get that information before storing or selling their child’s DNA.
KPIX has learned that most parents are not getting the required notification. We’ve also discovered the DNA may be used for more than just research.
In light of the Cambridge Analytica-Facebook scandal and the use of unidentified DNA to catch the Golden State Killer suspect, there are new concerns about law enforcement access, and what private researchers could do with access to the DNA from every child born in the state.
...
The lab generally only needs a few of the blood spots for the baby’s own potentially lifesaving genetic test. They use to collect five blood spots total from each child in California, they’ve now increased that to six.
Some states destroy the blood spots after a year, 12 states store them for at least 21 years.
California, however, is one of a handful of states that stores the remaining blood spots for research indefinitely in a state-run biobank.
Even though the parents pay for the lifesaving test itself, the child’s leftover blood spots become property of the state and may be sold to outside researchers without the parent’s knowledge or consent.
“I just didn’t realize there was a repository of every baby born in the state. It’s like fingerprints,” new mom Soniya Sapre responded.
...
Some states allow parents to opt-in or give informed consent before they store the child’s sample.
In California, however, in order to get the potentially lifesaving genetic test for your child, you have no choice but to allow the state to collect and store the remaining samples.
You do have the right to ask the biobank to destroy the leftovers after the fact, though the agency’s website states it “may not be able to comply with your request.”
You also have the right to find out if your child’s blood spots have been used for research, but you would have to know they were being used in the first place and we’ve discovered that most parents don’t.
http://sanfrancisco.cbslocal.com/2018/05/08/california-biobank-stores-baby-dna-access/
