The newborn screening program is a well-regarded standard of care for newborn infants. Although restricted later use of retained Guthrie cards, which form an inadvertent DNA sample bank, has the potential for enormous personal and community benefit, access is rarely granted and strict controls are in place to protect the information that may be derived from retesting the samples.
New parents who are approached to consent to a newborn screening test on their baby may be alarmed by recent publicity regarding privacy issues concerning Guthrie card blood spots. In Victoria, these blood spots have been collected since the commencement of the newborn screening program in the late 1960s and the Guthrie cards are stored indefinitely. In Western Australia, the State’s Guthrie cards stored from 1990 to 1995 were destroyed in 1998 and are now only retained for two years. This decision was apparently made after the Western Australia Police Service sought access to stored newborn blood sample cards for one of its investigations. Although there is widespread community support for newborn screening, some people may now be concerned about the privacy implications, especially since more information may be revealed as potential genetic tests become increasingly sophisticated and cards are kept for later reference for the family. This article aims to clarify the facts and thereby assuage these concerns.