Abstract
Purpose: The primary goals of the study were to assess maternal knowledge and attitudes about the newborn screening bloodspot repository program in Texas and to evaluate the effect of a video about the bloodspot repository on the rate of parental permission to store infant bloodspots.
Design: This descriptive, comparative study used descriptive statistics, nonparametric tests, and multivariable analyses to describe the sample, compare groups, and determine associations between factors that influenced parents' decisions to permit state storage of infant bloodspots.
Results: There were 465 mothers in the study. Maternal knowledge about basic genetics and risks of genetic testing was poor, but mothers reported strong trust in the state to make good decisions about using genetic material for research. Race, ethnicity, and attitude toward research significantly influenced decisions to opt-in to the bloodspot storage program. Postpartum nurses provided the bulk of information about newborn screening and dried bloodspots, although 2/3 of respondents would have preferred to obtain this information prior to birth.
Clinical Implications: Although postpartum nurses are the most common source of information about newborn screening, genuine informed consent for bloodspot storage is questionable. Information about newborn screening and bloodspot storage needs to be addressed in community venues prior to birth.