Each year, more than 3 million babies are born in the United States, and each one undergoes genetic testing. In 32 states, however, the residual dried-blood sample from every newborn is retained – in some states, they even become government property.
California, Indiana, Pennsylvania and Texas are just a few jurisdictions where genetic privacy has come to light — but California is the only one where lawmakers are taking action. They are considering a measure that could potentially improve data security of genetic samples stored by the state.
Assembly Bill 170 requires the California Department of Public Health (DPH) to obtain a signed acknowledgment form from parents that has details on the storage, retention and use of newborn babies’ blood samples. The DPH must comply with any request from parents to not use their child’s blood sample for medical research, or to destroy it.