title: Empirical data about women's attitudes towards a hypothetical pediatric biobank.
abstract: Researchers at the University of Chicago sought institutional review board (IRB) approval to establish both an obstetrical biobank (Chicago Lying-in Pregnancy Program [CLIPP]) and a pediatric biobank (KidsGene). Before KidsGene was approved, the IRB requested additional ethical review. The research ethics consultation service noted that no empirical data existed about parental attitudes towards this type of project. Postpartum women 18 years or older who delivered at the University of Chicago Hospitals and had live infants on the General Care Nursery service were approached about participating in a survey about the CLIPP biobank and about a hypothetical pediatric biobank. Two hundred thirty-nine women were consented and completed most or all of the survey. Eighty-two percent self-classified as Black and seven percent were Caucasians. Caucasians were the most willing to enroll their children hypothetically into a pediatric biobank with non-Black minorities being the most uncertain about what they would do. Almost half of the women thought that the research had the main goal of advancing science although a similar number expressed the belief that the research had the main goal of helping their individual child. Women supported use of the samples for a wide array of pediatric conditions. Comprehension of research practices, trust in medical researchers, and a belief that the research findings would be used fairly correlated with enrollment. Our survey found that most women support biobank development for research purposes. Most respondents expressed optimism that the results will yield significant benefits and that the benefits will be distributed fairly.
authors.affiliation: University of Chicago, Chicago, Illinois, USA.
authors.forename: Alon B
authors.initials: AB
authors.lastname: Neidich
authors.forename: Josh W
authors.initials: JW
authors.lastname: Joseph
authors.forename: Carole
authors.initials: C
authors.lastname: Ober
authors.forename: Lainie Friedman
authors.initials: LF
authors.lastname: Ross
mesh_terms: D000328:Adult; D001290:Attitude; D002648:Child; D005260:Female; D005312:Fetal Blood; D006801:Humans; D009035:Mothers; D014015:Tissue Banks / Q000941:ethics; D014930:Women