When babies are born in California, as in a number of states, specimens are collected for testing to determine whether the infant has a disorder that needs to be treated right away, but as CBS News reports, these samples are stored, sold for outside research, and may be being used for more than that.
While CBS San Francisco notes that California law requires parents to be informed that they have the right to have their child's blood sample destroyed, it adds that the law doesn't mean the parents are told of that before the sample is stored or sold. The station asked six new mothers what they remembered about the genetic test to find that three remembered it clearly and three had a vague idea about it. None knew what happened to the heel-prick blood spots after collection, it adds.
Testing, CBS San Francisco says, can be life saving, and Fred Lorey, the former director of the California Genetic Disease Screening Program, says using the samples in later research helps create new tests. But privacy advocates worry that blood and DNA, even when divorced from names and other information, are intrinsically identifiable.
That, the station adds, could be concerning as researchers aren't the only ones with access to the samples — law enforcement agencies have also requested access through search warrants and court orders.