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.