Newborn DNA Storage in California
California has been storing blood spots from every baby born in the state since the 1980s. These DNA samples can be used by researchers and law enforcement authorities without the knowledge or approval of the individual. If you are related to someone born in California since 1983, part of your DNA is likely in the state’s massive newborn genetic bioank.
Legislative Changes
In response to a decade-long investigation by CBS News California, legislators introduced several bills this year aimed at shedding light on how the state is collecting and using the California newborn DNA biobank. SB 1099 was the only bill to survive the legislative session. While data protection advocates say it is a step in the right direction, recent changes raise new questions about the state’s commitment to transparency.
Requirements for Transparency
The initial bill required the state to disclose the number of newborn DNA samples stored, the number of DNA samples sold to researchers each year, and which researchers were buying the DNA and what they were using it for. However, the bill was amended to remove the requirements for disclosing which researchers buy the DNA and what they use it for. The California Department of Public Health must now only show the number of newborn DNA samples stored and the number of DNA samples sold to researchers every year.
Implications and Next Steps
Data protection advocates plan to try again next year to introduce legislation that will provide more transparency into the use of newborn DNA in California. Despite the changes to SB 1099, the bill still marks a step towards greater transparency in the state’s handling of newborn DNA. The storage and use of newborn DNA raise important questions about privacy and the need for greater transparency and accountability in the collection and use of genetic data.
