A government repository of the DNA of all children born? It sounds like something out of 20th Century dystopian fiction. Surely, that can’t happen here, right? Actually, millions of newborns each year provide a blood sample to the state, to be screened for congenital disorders. But what happens to it next is alarming. The blood (and DNA) samples are deposited into a biobank where they can be used by outside researchers (who pay), for tests that few parents know about or consent to. These samples contain the most sensitive personal information: our children’s genetic information. And the state is storing that information and selling it to outside entities.
Assemblyman Mike Gatto (D-Burbank) introduced legislation to protect the privacy of California’s citizens. The bill, AB 170, would strengthen the notice requirements when dried blood spot (DBS) samples are taken from newborns to screen for diseases. Gatto’s proposal would require that parents be provided information regarding the retention of DBS samples, including the parents’ right to request the destruction of their child’s DBS. The bill would further permit children to request the destruction of their DBS when they reach adulthood.
“Whenever data is stored, data can fall into the wrong hands. Imagine the discrimination a person might face if their HIV status, or genetic predisposition to a mental disorder were revealed to the public,” said Gatto. “Parents should have the right to protect their children and people should have the right to control how their personal medical records are used once they reach adulthood.”
All 50 states operate newborn screening programs to screen for certain metabolic, endocrine, or hemoglobin disorders, as well as genetic disorders including cystic fibrosis, phenylketonuria, and severe combined immunodeficiency. California, which screens over 500,000 newborns each year, provides one of the largest population-based screening programs in the world. Early detection and treatment of these disorders can prevent serious medical problems such as intellectual disabilities and life-threatening diseases. The test is administered by taking a few drops of blood from the baby’s heel and placing the blood spots on special filter paper that is then sent to a state-approved lab for testing.
California is one of just four states where the DBS becomes the property of the state — and therefore a de facto, government-owned-and-operated DNA repository. Furthermore, the California Department of Public Health loans DBS samples to researchers, for a fee. These retention and loan practices have raised concerns that a person’s personal medical information, contained in their DBS, could become public. Current laws do not mandate that parents to be provided information regarding the retention of DBS, nor their right to request the destruction of their child’s DBS. It also does not allow for the person whose blood was taken as a newborn to request destruction of their sample once they reach adulthood.
“Newborn screening is an incredible tool that has saved millions of newborns. But during an era of omnipresent intrusion in our lives, policymakers must take steps to safeguard our personal information, especially medical records, which are particularly personal,” said Assemblyman Gatto. “AB 170 will ensure that parents can protect their children’s privacy and can destroy infant-screening records after they have served their purpose.”