SB 625 Newborn screening: genetic diseases: blood samples collected. (Nguyen) This bill would require the department of health to provide information about the newborn testing program, and to obtain written consent from the parent or guardian acknowledging receiving information regarding the storage, retention, and use of the newborn child’s blood sample for medical research. The bill would prohibit any residual newborn screening specimen from being released to any person or entity for law enforcement purposes. The bill would authorize a parent or guardian of a minor child to consent to the storage of the residual blood sample and the use of the sample for research purposes prior to or at the time the sample is taken.
CURRENT STATUS: Passed Senate Health Committee but for strategic reasons will be a two year bill.
Why SB 625 is Important:
Each year in California, hundreds of thousands of newborn screenings are performed to detect genetic conditions. The blood specimen and information obtained during the testing process become the property of the state. California indefinitely stores the residual blood samples and makes them available to third party researchers without the consent of parents.
These blood samples contain a wealth of personal information on our children, from eye and hair color to predisposition to diseases. This genomic data is highly distinguishable and cannot be truly de-identified. Many people are concerned about law enforcement using residual newborn blood samples in their search for suspects through Investigative Genetic Genealogy.
