Informing parents about newborn screening.

Published

Journal Article

OBJECTIVE: To evaluate current rules and regulations for educating parents about newborn screening. DESIGN: Cross-sectional survey. SAMPLE: Newborn screening program coordinators in all 50 states and the District of Columbia. MEASUREMENTS: Answers to a standardized semi-structured telephone survey in January 2004. RESULTS: Fifty programs provide standardized information about screening, and 32 of these have information available in multiple languages. Most programs (n=36) believe that parents should be informed about newborn screening as a part of prenatal care; however, none has rules or regulations requiring this. Five require documented informed consent; only one provides the consent form in a language other than English. Hospitals and birthing centers are required by many programs to educate families, including providing information (n=12), obtaining informed consent (n=5), informing parents of the right to refuse screening (n=13), and documenting refusal on institutionally developed forms (n=9). We found considerable variation in policy language across the newborn screening programs. CONCLUSIONS: The complexity of current newborn screening programs and the likelihood of expansion in the number of conditions on newborn screening panels present a unique opportunity and challenge for public health nurses to ensure that these programs are effective and that care is integrated.

Full Text

Cited Authors

  • Kemper, AR; Fant, KE; Clark, SJ

Published Date

  • July 2005

Published In

Volume / Issue

  • 22 / 4

Start / End Page

  • 332 - 338

PubMed ID

  • 16150014

Pubmed Central ID

  • 16150014

Electronic International Standard Serial Number (EISSN)

  • 1525-1446

International Standard Serial Number (ISSN)

  • 0737-1209

Digital Object Identifier (DOI)

  • 10.1111/j.0737-1209.2005.220408.x

Language

  • eng