Parenting in the genomic age: The 'cursed blessing' of newborn screening

Abstract

Newborn screening for genetic disorders is the most widely-used form of genetic testing in the United States, and the number of disorders for which infants are screened is now expanding rapidly. This article explores the dominant narratives structuring public understanding about the need for mandatory screening, and about screening programs' unprecedented practice of testing for non-infectious diseases without parental consent. Using primary data from a qualitative research study, the author also examines the experience of newborn screening from the perspective of mothers, with particular attention to how receipt of a genetic diagnosis at birth affects early parenting, mothers' perceptions of their babies, and the power dynamics between parents and their health care providers. © 2006 Taylor & Francis.