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

• Published in: Social science & medicine (1982) 2016-10, Vol.166, p.17-24
• Main Authors: Paquin, Ryan S., Peay, Holly L., Gehtland, Lisa M., Lewis, Megan A., Bailey, Donald B.
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Children; Cohort Studies; Consent; Decision Making; Expanded newborn screening; Female; Humans; Infant, Newborn; Infants; Informed decision; Intention; Intentions; Internet; Locus of control; Male; Medical diagnosis; Medical screening; Medical treatment; Middle Aged; Neonatal Screening - economics; Neonatal Screening - methods; Neonatal Screening - psychology; Newborn babies; Parent participation; Parent training; Parents & parenting; Parents - psychology; Participation; Reasoned action; Regression Analysis; Surveys and Questionnaires; Tests; Theory of planned behavior; United States; Voluntary Programs
• ISSN: 0277-9536; 1873-5347
• DOI: 10.1016/j.socscimed.2016.07.036

Nearly all babies in the United States are tested at birth for rare, serious, and treatable disorders through mandatory state newborn screening (NBS). Recently, there have been calls for an expanded, voluntary model to facilitate early diagnosis and treatment of a wider range of disorders. We applied the reasoned action framework to examine parental intentions to participate in voluntary expanded screening. We recruited a national cohort of recent and expectant parents living in the U.S. who completed a self-administered online survey (N = 1001). Using a mixed-level fractional factorial experiment, we studied parental participation intentions and preferences for timing of consent, cost, consent format, and testing options. We conducted a hierarchical regression analysis assessing parental intentions to participate in voluntary expanded NBS. Attitudes, perceived normative influence, and perceived behavioral control explained substantial variance in intention, with perceived normative influence emerging as the strongest predictor. We found no evidence that the manipulated program features altered mean levels of intention, but timing of parental permission, cost, and permission format moderated the relative importance of reasoned action constructs on intention. Program design features may impact the psychological mechanisms underlying parental decision making for voluntary expanded screening. These results have important implications for parent education, outreach, and informed parental permission procedures. •Experiment tests the impact of program features on expanded screening intentions.•Data from a national online survey of recent and expectant parents.•Parents tended to support optional population-based newborn screening.•Program features impact psychological mechanisms underlying decisions to participate.