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Informing Parents About Newborn Screening
Author(s) -
Kemper Alex R.,
Fant Kathryn E.,
Clark Sarah J.
Publication year - 2005
Publication title -
public health nursing
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.471
H-Index - 55
eISSN - 1525-1446
pISSN - 0737-1209
DOI - 10.1111/j.0737-1209.2005.220408.x
Subject(s) - newborn screening , informed consent , family medicine , telephone survey , medicine , nursing , public health , health care , prenatal care , pediatrics , environmental health , alternative medicine , business , political science , population , pathology , marketing , law
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.