Assemblyman Mike Gatto’s DNA Privacy Bill Clears First Hurdle, Passes Privacy and Consumer Protection Committee
SACRAMENTO – A closely watched bill by Assemblyman Mike Gatto (D-Glendale) to strengthen notice requirements for the storage of newborn blood samples passed the Assembly’s newly created Privacy and Consumer Protection Committee by a vote of 9 to 2. The legislation, AB 170, would require parents to be informed that these samples can be stored in perpetuity for experimentation purposes by for-profit researchers, giving these parents the opportunity to not consent to such storage and experimentation. It would further require the destruction of stored samples upon request of a child reaching adulthood.
Each year, thousands of newborns are screened at birth for genetic and metabolic disorders, saving countless lives as a result. AB 170 will do nothing to affect this important public health policy. Rather, the measure addresses the storage of samples after these lifesaving tests take place. It will require parents to be notified that their newborn’s genetic materials will be kept for the purposes of experimentation and require the state to get explicit permission from parents to retain this blood sample and loan it out for research.
“Newborn blood screening is an incredible tool that saves untold numbers of lives every year. Last year I co-authored AB 1559, a measure that expanded such screening for diseases that affect the brain and nervous system,” said Gatto. “But during an era of omnipresent intrusion in our lives by the government, policymakers must take steps to safeguard our personal information, especially medical records, which are particularly personal.”
California is just one of four states where newborn blood samples become the property of the state—thus creating a de facto, government-owned-and-operated DNA repository. The Department of Public Health then loans these samples to researchers for a fee. Such retention and loan practices have raised concerns that highly personal genetic information contained in a genetic sample, such as predispositions for conditions such as cancer or alcoholism, could become public and used for nefarious purposes. AB 170 will allow parents to make an informed decision about allowing their newborn’s blood sample to be retained and loaned out to for-profit researchers.
“Whenever any data is stored and shared, it can very easily fall into the wrong hands. Recent high profile data breaches involving credit and medical records have heightened concerns about what personal information has fallen into the hands of criminals.” said Gatto. “Now imagine a similar data beach resulting in your most personal data of all—your genetic make-up—falling into the wrong hands. AB 170 is a proactive step against such a breach.”
The measure will next be considered by the Assembly Committee on Health.
Mike Gatto is the Chairman of the Consumer Protection and Privacy Committee, and the longest-serving current member of the State Assembly. He represents California’s 43rd Assembly District, which includes Burbank, Glendale, La Cañada Flintridge, La Crescenta, Montrose, and the Los Angeles neighborhoods of Atwater Village, East Hollywood, Franklin Hills, Hollywood Hills, Los Feliz, and Silver Lake. www.asm.ca.gov/gatto
