Governor Gavin Newsom signed a bill into law (SB 1099) on Wednesday following a decade-long investigation by CBS News California into California’s newborn genetic biobank.
We still won’t know who is using your DNA for research, or what the research is for, but the California Department of Public Health must now disclose the number of newborn DNA samples California keeps and the number of DNA samples the state has stored. sells to researchers every year.
California has stockpiled bloodstains from every baby born in the state since the 1980s. Researchers and law enforcement may use these DNA samples without your knowledge or consent.
If you’re related to someone born in California since 1983, some of your DNA is likely in the state’s massive Newborn Genetic Biobank. In response to our decade-long investigation, lawmakers this year introduced several bills intended to shed light on how the state collects and uses California’s DNA stockpile.
SB 1099 was the only bill to survive the legislative session.
While privacy advocates say this is a step in the right direction, recent changes raise new questions about the appearance of state secrecy.
The original bill was heavily amended to remove requirements for the state to disclose which researchers purchase the DNA and what they use it for.
Privacy advocates plan to try again next year.
Check out our ongoing coverage of newborn privacy issues here.
Learn more about newborn bloodstain storage and how to opt out of storage or research here.
