Governor Gavin Newsom signed a bill (SB 1099) Wednesday was prompted by a decade-long CBS News California investigation into California’s newborn genetic biobank.
We still won’t know who uses 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 stores and the number of DNA samples the state sells to researchers each year .
California has stored blood spots from every child born in the state since the 1980s. Researchers and law enforcement agencies 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, legislator submitted several bills this year that were meant to shed light on how the state collects and uses California’s newborn DNA stock.
SB 1099 was the only bill to survive the legislative session.
While privacy advocates say it’s a step in the right direction, the latest changes raise new questions about the appearance of government secrecy.
The original bill was heavily amended to remove requirements for the state to disclose which researchers are buying the DNA and what they are using it for.
Privacy advocates plan to try again next year.
See our continued coverage of newborn blood spot privacy issues here.
Read more about storage of newborn blood spots and how to opt out of storage or research here.