Newborn DNA Collection Raises Serious Privacy Concerns

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 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. 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 six states where the dried blood spot (DBS) sample becomes the property of the state indefinitely – and therefore a de facto, government-owned-and-operated DNA repository. The California Dept. 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. Imagine the discrimination a person might face if their HIV status or genetic predisposition to a mental disorder were revealed to the public. 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.

That’s why I introduced legislation in January to protect the privacy of California’s citizens. The bill, AB 170, would strengthen the notice requirements when dried blood spot samples are taken from newborns to screen for diseases. It 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.

Newborn screening is an incredible tool that has saved millions of newborns. But during an era of omnipresent intrusion in our lives, I believe we must take steps to safeguard our personal information, especially medical records. AB 170 will ensure that parents can protect their children’s privacy and can destroy infant-screening records after they have served their purpose.

I am committed to protecting our families and communities from unnecessary invasions into our private lives. As the chairman of the new Assembly Committee on Privacy and Consumer Protection, I want to hear your ideas for additional legislation or events on this topic. Please contact my district office at (818) 558-3043. My staff and I will be happy to assist you.

Mike Gatto represents 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.  Follow him on Twitter @MikeGatto or visit www.asm.ca.gov/gatto.