If you were born in California after 1983, your DNA may be stored by the government and may even be in the hands of outside researchers.
Dr. Fred Lorey, the former director of the California Genetic Disease Screening Program, explained that blood spot samples are invaluable to researchers.He explained that they're primarily used to identify new diseases and improve the current tests, ultimately saving more babies
But researchers with the California Genetic Disease Screening Program aren't the only ones with access to samples stored in the biobank.Regulations require that the California Genetic Disease Screening Program to be self-supporting. "Theoretically, yes," Lorey admitted."I'm not aware of any cases that that's happened because virtually all, not all, of these researchers that have made requests are scientific researchers."
Lorey explained the identifying information is stored in a separate building and after a few years is microfiched so it's not even kept on a server. Samples do need to be re-identified for various reasons, but Lorey says, in those cases, parents are notified. Law enforcement also can -- and does -- request identified blood spots. We found at least five search warrants and four court orders, including one to test a child's blood for drugs at birth.
"I feel like that's something that should have been discussed with us in person, not on whatever page in a document," another new mom, Lesley Merritt, responded.
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