A bill to protect the privacy of newborn baby’s blood sample, authored by Senator Janet Nguyen (R-Huntington Beach), is on the way the Senate Appropriations Committee with overwhelmingly bipartisan support.
SB 625 passed the Senate Judiciary Committee 8-0 following a Thursday hearing. It requires the California Department of Health to provide information about its newborn blood screening program and obtain written consent from parents or guardians regarding storage, retention and use of a sample for future medical research.
“This bill clarifies and expands the law relative to handling blood samples that are taken from newborn babies during genetic screening tests for treatable inherited diseases and disabilities,” Senator Janet Nguyen said during the hearing. “We want to ensure that parents are properly informed about their rights and this measure will help close the gap and eliminate confusion on the issue.”
According to California Health Coalition Advocacy (CHCA), which sponsored the legislation, “SB 625 would ensure that parents have the ability to protect their child’s genetic information by having the ability to withhold consent for the storage of the residual sample and/or the use of the sample for research purposes.”
Current regulations lack appropriate consumer and patient privacy protections. Numerous constituents have contacted Senator Janet Nguyen saying they were shocked and devastated to learn that their children’s baby blood was used for research without their approval.
“Today’s vote is a win for parents,” Senator Janet Nguyen said. “By giving parents the right to prohibit the use and retention of their baby’s blood sample for research purposes and indefinite storage by the state, we bolster the ability for parents to protect their child’s privacy.”
Currently newborns are screened shortly after birth for a variety of genetic diseases unless parents decline due to religious reasons. These blood screenings are then stored indefinitely by the state for future medical research.
CONTACT: Tori Richards (714) 374-4000