Gov. Gavin Newsom signed a bill (SB 1099) Wednesday prompted by a decade-long CBS News California investigation 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 reveal the number of newborn DNA samples that California is storing and the number of DNA samples that the state sells to researchers each year.
California has stored blood spots from every baby born in the state since the 1980s. Researchers and law enforcement can use those DNA samples without your knowledge or consent.
If you’re related to someone who was born in California since 1983, a portion of your DNA is likely in the state’s massive Newborn Genetic Biobank. In response to our decade-long investigation, lawmakers introduced several bills this year that were intended to shed light on how the state is amassing and using California’s newborn DNA stockpile.
SB 1099 was the only bill to survive the legislative session.
While privacy advocates say it is a step in the right direction, recent amendments raise new questions about the appearance of state secrecy.
The initial bill was heavily amended to remove the requirements for the state to reveal which researchers are purchasing the DNA and what they are using it for.
Privacy advocates plan to try again next year.
See our continuing coverage on newborn blood spot privacy concerns here.
Learn more about newborn bloodspot storage and how to opt out of storage or research here.