Gov. Newsom Signs Law on Newborn DNA Research Transparency

Gavel resting on books in front of bookshelf.

California’s Governor Gavin Newsom signs a new law requiring disclosure of newborn DNA sample storage and sales, but privacy concerns remain.

At a Glance

SB 1099 signed into law, stemming from a decade-long CBS News California investigation
California must now disclose the number of newborn DNA samples stored and sold annually
Privacy advocates see the bill as a step forward but express concerns about remaining secrecy
The law falls short of detailing who purchases the DNA samples and their research purposes
Further legislative efforts are expected to push for fuller disclosure

California’s Newborn DNA Collection Under Scrutiny

In a move that partially addresses long-standing privacy concerns, California Governor Gavin Newsom has signed Senate Bill 1099 into law. This legislation, prompted by a decade-long CBS News California investigation, requires the California Department of Public Health to disclose the number of newborn DNA samples stored and sold to researchers each year. The bill’s passage marks a significant development in the ongoing debate over the state’s handling of genetic information collected from newborns.

Since the 1980s, California has been collecting and storing blood spots from every baby born in the state. These samples, which contain genetic information, have been used for various research purposes and by law enforcement, often without the knowledge or consent of the individuals involved. The practice has raised serious privacy concerns, particularly as the state’s Newborn Genetic Biobank has grown to include DNA samples from millions of Californians.

Lawmakers quietly amended a bill prompted by a decade-long CBS investigation into California's Newborn Genetic Biobank. They removed the part that requires the state to reveal who is using our DNA for research and why. https://t.co/ukKzudN9Qv

— CBS Sacramento (@CBSSacramento) August 1, 2024

New Law’s Scope and Limitations

While SB 1099 introduces new transparency measures, it stops short of providing full disclosure about the use of these genetic samples. The law requires the California Department of Public Health to report various data to the Legislature annually starting January 1, 2026. This includes the number of research projects using residual screening samples, inheritable conditions identified, and other related metrics.

The bill also establishes a fee structure to support the genetic disease testing program and the Birth Defects Monitoring Program. It creates a dedicated fund for supporting pregnancy blood sample storage, testing, and research activities. However, privacy advocates remain concerned about recent amendments that removed requirements to disclose which researchers are purchasing the DNA and their specific research purposes.

Implications for California Residents

The implications of this law extend to a significant portion of California’s population. If you are related to someone born in California since 1983, it’s likely that a portion of your DNA is stored in the state’s Newborn Genetic Biobank. This widespread collection of genetic information raises questions about privacy, consent, and the potential for misuse.

The new law also mandates the inclusion of environmental health information in the California Prenatal Screening Program’s educational materials. This provision aims to increase awareness about potential environmental risks during pregnancy.

“We encounter chemicals and other substances in everyday life that may affect your developing fetus. Fortunately, there are steps you can take to reduce your exposure to these potentially harmful substances at home, in the workplace, and in the environment. Many Californians are unaware that a number of everyday consumer products may pose potential harm. Prospective parents should talk to their doctor and are encouraged to read more about this topic to learn about simple actions to promote a healthy pregnancy.” – LegiScan

Looking Ahead: Future Legislative Efforts

While SB 1099 represents progress in increasing transparency, privacy advocates plan to reintroduce efforts next year to address remaining concerns. The partial nature of the disclosure requirements in the current law has left many unsatisfied, particularly regarding the identities of DNA purchasers and the specifics of their research.

As the debate over genetic privacy and research ethics continues, California residents are encouraged to stay informed about their rights and options regarding newborn DNA storage and research participation. The ongoing legislative efforts and public discourse surrounding this issue underscore the complex balance between scientific research, public health, and individual privacy rights in the age of advanced genetic technologies.