Parental intentions to enroll children in a voluntary expanded newborn screening program

Area of Science:

• Public Health
• Genetics
• Behavioral Science

Background:

• Mandatory newborn screening (NBS) in the U.S. tests infants for rare, treatable disorders.
• Expanded, voluntary NBS models are proposed for broader early diagnosis and treatment.
• The reasoned action framework was used to study parental intentions for voluntary NBS.

Purpose of the Study:

• To examine parental intentions to participate in voluntary expanded newborn screening.
• To identify key factors influencing parental decisions regarding expanded NBS.
• To explore preferences for program design features like consent timing, cost, and format.

Main Methods:

• A national cohort of 1001 recent and expectant parents completed an online survey.
• A mixed-level fractional factorial experiment assessed participation intentions and preferences.
• Hierarchical regression analysis was used to evaluate predictors of intention.

Main Results:

• Attitudes, perceived normative influence, and perceived behavioral control significantly predicted intention to participate.
• Perceived normative influence was the strongest predictor of participation intention.
• Program features (timing, cost, format) moderated the influence of psychological constructs on intention.

Conclusions:

• Program design elements can influence parental decision-making for voluntary expanded NBS.
• Findings have implications for developing effective parent education and informed consent procedures.
• Understanding psychological mechanisms is crucial for successful implementation of expanded NBS.