Screening for Fragile X Syndrome: parent attitudes and perspectives.

Abstract

This study examined the attitudes and beliefs of 442 parents of children with fragile X syndrome (FXS) regarding different screening options for FXS. A survey was administered to parents of children with FXS across the U.S. Parents indicated their support for voluntary screening for FXS, especially carrier and newborn screening. They also thought advantages of widespread screening to be more likely than disadvantages. Parents' support for FXS screening is at odds with current screening criteria, but as new genetic knowledge and technologies reconfigure these criteria, it will be important to take parents' perspectives into account.