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ERIC Number: ED542427
Record Type: Non-Journal
Publication Date: 2011-Aug
Pages: 2
Abstractor: ERIC
Reference Count: N/A
ISBN: N/A
ISSN: N/A
Parents' Decisions to Screen Their Newborn for Fragile X Syndrome. FPG Snapshot #63
FPG Child Development Institute
State newborn screening (NBS) programs have expanded in recent years, and more tests may be added in the future. The expansion of neonatal screening raises ethical, legal, and social questions. The questions surrounding NBS for fragile X syndrome (FXS) typify these concerns. FXS is an X-linked genetic condition that is the most common inherited cause of intellectual disability. Recognizing that there has been little empirical investigation focused on the risks and benefits of expanded NBS, FPG researchers in collaboration with RTI International conducted a pilot study at the University of North Carolina Hospitals, which serve a socioeconomically and ethnically diverse patient population. Using a newly available and cost-effective screening test, the study offered voluntary NBS for both the fragile X full mutation and premutation. The study then examined parental consent rates, characteristics of parents who consented or declined, and parents' reasons for their decisions.
FPG Child Development Institute. University of North Carolina, Publications Office, CB# 8185, Chapel Hill, NC 27599-8185. Tel: 919-966-0857; e-mail: FPGpublications@unc.edu; Web site: http://www.fpg.unc.edu/
Publication Type: Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: University of North Carolina at Chapel Hill, FPG Child Development Institute
Identifiers - Location: North Carolina