The United States National Security Agency Contractor Edward Snowden
Scutti’s Newsweek article is one of many articles published on genetic testing for newborns in the United States. Genetic testing for neonates dates back to the 1960s when President Kennedy signed Public Law 88-164 and Public Law 88-156. These Acts authorized the federal government to offer grants to states for mental retardation programs.
Robert MacCready, who was the chair of National Association for Retarded Citizens
(NARC) Public Health Services Committee took advantage of the Acts and joined with the state laboratory director of Massachusetts. Together they initiated a newborn screening program to test for phenylketonuria (PKU) a rare genetic disease. Delay in diagnosis and treatment of PKU would lead to mental retardation and death.
Few newborn were diagnosed with PKU, but the benefit of an earlier analysis encouraged other states to introduce screening programs. Over the years 46 states mandated screening for six inherited…