Screening for Fragile X Syndrome: Parent attitudes and perspectives

Debra Skinner, Karen L Sparkman, Donald B Bailey
2003 Genetics in Medicine  
Purpose: This study examined the attitudes and beliefs of 442 parents of children with fragile X syndrome (FXS) regarding different screening options for FXS. Methods: A survey was administered to parents of children with FXS across the U.S. Results: 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. Conclusion: Parents' support for FXS screening is
more » ... t 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. Genet Med 2003:5(5):378 -384.
doi:10.1097/01.gim.0000086480.69309.1e pmid:14501833 fatcat:j6p4ihsgfbeozhz4fz4wqsnrmm