Should you have the right to know that California is storing your child's DNA? Bill sponsors say, yes.
Should you have the right to know that the state of California is storing your child's DNA and that a state agency may sell it to researchers or give it to law enforcement without your consent? The sponsors of a new bill think you should.
California has been storing DNA from every child born in the state since the '80s, but most parents still have no idea. SB-625 would require that the state get written consent from parents before indefinitely storing their babies' newborn genetic bloodspot samples. Similar legislation failed in 2015, but that was before the Golden State Killer case changed our understanding of DNA.
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Nearly every baby born in the U.S. gets a heel prick shortly after birth. Their newborn blood fills six spots on a special card which is used to test the baby for dozens of disorders that, if treated early enough, could prevent severe disabilities.
The test itself is crucial and potentially lifesaving, but it's what happens after the test that has some people concerned. The leftover blood spots become the property of the state and may be used or purchased by researchers without your knowledge or consent. They may also be obtained by law enforcement with a court order.
The state has long insisted that the blood spots are de-identified before they're given to researchers. However, thanks to genetic genealogy, DNA is inherently identifiable and records obtained by CBS13 reveal that identified blood spots are used by law enforcement in California.
Records obtained in 2010 revealed at least five search warrants and four court orders for identified blood spots, and that was before the Golden State Killer case made genetic genealogy a common law enforcement tool. Investigators have since confirmed that at least one local cold case was more recently solved with the help of newborn blood spots.
However, the California Department of Public Health denied our request for an updated list of bloodspot requests from researchers and law enforcement. The agency says it "is no longer tracking that information" like it used to. So it is unclear how often law enforcement is requesting newborn DNA and how the DNA stockpile is currently being used by researchers.
The new legislation would require the agency to get written consent before storing a newborn DNA sample after the child's genetic test. The test itself is required by law. Parents can request the sample is destroyed after the test, but most parents have no idea the DNA sample is being stored at all.
A 2018 statewide CBS News poll found that three-quarters of new parents who were surveyed had no idea the state would store the leftover blood spots indefinitely for research or that they would be accessible to law enforcement.
The new legislation would also prohibit law enforcement access to the DNA. Law enforcement sources tell CBS13 that access to the newborn bloodspots could help solve countless crimes, however many support a parent's right to opt-in to storage.
Meanwhile, many in the medical research community oppose parental consent because they think more parents would opt out and researchers rely on California's newborn DNA stockpile, which is believed to be the largest in the country.
