Unknown to many parents, California’s state health department collects and stores blood samples from newborn babies without their consent—but that could soon change.
Under current law, California newborns are screened just after birth for a variety of genetic diseases, unless parents decline due to religious reasons. The blood screenings are stored indefinitely by the state for future medical research.
“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,” Ms. Nguyen said during the hearing last week.
Numerous constituents have contacted the senator’s office saying they were shocked and devastated to find out that their children’s blood was being used for research without their approval, according to Ms. Nguyen.
If the bill passes the state’s Senate and Assembly, and is signed into law by the governor, the measure would require parental or guardian consent for the storage of a newborn’s blood sample and the use of it for research.
Also, if passed, the state would be prohibited from giving any newborn screening specimens to law enforcement or anyone else.
The California Health Coalition Advocacy, a nonprofit of public and private employers, unions, and health and welfare trust funds, said many people are concerned about how the blood samples are used by the state.
“Many, including the [American Civil Liberties Union], are concerned about law enforcement using residual newborn blood samples in their search for suspects through investigative genetic genealogy,” the advocacy group said.
In 2021, the state passed the Genetic Information Privacy Act to protect genetic information and to require consent for its collection, use, or disclosure. The act specifically excluded the California Newborn Screening Program, however.
The state began collecting a few drops of blood from a newborn’s heel beginning in 1966. The program has been expanded several times through the years as new discoveries are made and tests developed. It now screens for more than 80 disorders, according to an analysis of the bill.
The blood samples are kept by the California Biobank Program maintained by the California Department of Public Health. The bank now includes more than 20 million newborn blood samples, the bill analysis reported.
The health department is mandated by law to make the blood specimens and data available to researchers for identifying risk factors for children’s and women’s diseases, and for developing and evaluating screening tests, strategies, and treatment.
