title: Lessons that newborn screening in the USA can teach us about biobanking and large-scale genetic studies.
abstract: The intent in establishing newborn screening programs was not to create and sustain a large-scale genetic biobanks. Instead, newborn screening programs were designed as a public health program. As such, they have successfully screened millions of asymptomatic newborns for disease that, undiagnosed and untreated, would cause disability or death. However, historical decisions on retention of residual samples and technological innovation have forced these programs and their proponents to confront the prospect of biobanking and the conduct of large-scale genetic studies. We suggest that the challenges facing newborn screening can provide important lessons for other biobanking and large-scale genetic testing endeavors.
authors.affiliation: Child Health Evaluaton & Research (CHEAR) Unit, University of Michigan, 300 N Ingalls St, Room 6C11, Ann Arbor, MI 48109-0456, USA.
authors.forename: Beth A
authors.initials: BA
authors.lastname: Tarini
authors.forename: John D
authors.initials: JD
authors.lastname: Lantos
keywords: biobanking; genetics; newborn screening; screening