Parents and others speaking at the June 2004 meeting of HRSA’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children argued that state newborn screening programs need to do more to inform parents-to-be of the lifesaving potential of comprehensive newborn screening tests, including ones that parents may need to seek out and pay for on their own.

Following this meeting, HRSA’s Maternal and Child Health Bureau (MCHB) officially recommended that state newborn programs create a way to make new parents aware of all available screening options.

In a letter to state health officials, maternal and child health directors, newborn screening programs, and directors of agencies for children with special health care needs, Dr. Peter van Dyck of the MCHB noted that, "in the past few years, the possibilities for screening newborns have greatly expanded. And while not all states may be utilizing these new technologies, parents need to know about the full spectrum of options available for newborn screening."

Van Dyck quotes a recommendation by the American Academy of Pediatrics’ Newborn Screening Task Force that "each state or region should, with input from families who have children with special health care needs and/or parent information centers, develop and provide family educational materials about newborn screening."

Trish Mullaley, President of the National Coalition for PKU & Allied Disorders, notes that the MCHB letter "shows that the message from newborn screening advocates was loud and clear. This letter will be a good tool when advocating in your state," she adds. "It can be used to help generate expansion, whether through the state or birthing hospitals. Every pregnant mother needs to have access to this information."