title: The Influence of Education on Public Trust and Consent Preferences With Residual Newborn Screening Dried Blood spots.
abstract: The objectives of this study were to evaluate the impact of educational interventions during prenatal care on public trust for newborn screening and consent preferences for the retention and use of leftover newborn screening dried blood spots. Women who were 30 to 36 weeks pregnant were recruited, and outcomes were measured by telephone survey 2 to 4 weeks postpartum (n = 901). Approximately 40% of the sample chose the opt-out approach but those who watched educational interventions delivered during prenatal care were significantly associated with higher levels of trust and support for an opt-out consent approach. Providing education during prenatal care about newborn screening and the storage and use of leftover dried blood spots along with brochure-based education provided in the hospital when the baby is born is associated with improved trust for the program and support for research with the leftover blood spots.
authors.affiliation: University of Utah, Salt Lake City, USA erin.rothwell@nurs.utah.edu.
authors.forename: Erin
authors.initials: E
authors.lastname: Rothwell
authors.affiliation: University of Utah, Salt Lake City, USA.
authors.forename: Bob
authors.initials: B
authors.lastname: Wong
authors.affiliation: University of Utah, Salt Lake City, USA.
authors.forename: Rebecca A
authors.initials: RA
authors.lastname: Anderson
authors.affiliation: University of Utah, Salt Lake City, USA.
authors.forename: Jeffrey R
authors.initials: JR
authors.lastname: Botkin
mesh_terms: D000328:Adult; D001290:Attitude; D018070:Biological Specimen Banks / Q000941:ethics*; D035843:Biomedical Research / Q000941:ethics*; D032984:Ethics, Research; D005260:Female; D006266:Health Education; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D009035:Mothers; D015997:Neonatal Screening / Q000379:methods*; D010174:Pamphlets; D033282:Parental Consent; D011795:Surveys and Questionnaires; D035502:Trust
keywords: consent; newborn screening; opt-out; prenatal; public health; residual newborn screening dried blood spots; trust