title: What parents want to know about the storage and use of residual newborn bloodspots.
abstract: Many state newborn screening programs retain residual newborn screening bloodspots for a variety of purposes including quality assurance, biomedical research, and forensic applications. This project was designed to determine the information that prospective parents want to know about this practice. Eleven focus groups were conducted in four states. Pregnant women and their partners and parents of young children (N = 128) were recruited from the general public. Focus group participants viewed two educational movies on newborn screening and DBS retention and use. Transcripts were analyzed with qualitative methods and the results were synthesized to identify key information items. We identified 14 categories of information from the focus groups that were synthesized into seven items prospective parents want to know about residual DBS. The items included details about storage, potential uses, risks and burdens, safeguards, anonymity, return of results, and parental choice. For those state programs that retain residual dried bloodspots, inclusion of the seven things parents want to know about residual dried bloodspots in educational materials may improve parental understanding, trust, and acceptance of the retention and use of stored bloodspots.
authors.affiliation: University of Utah School of Medicine, Salt Lake City, Utah.
authors.forename: Jeffrey R
authors.initials: JR
authors.lastname: Botkin
authors.forename: Erin
authors.initials: E
authors.lastname: Rothwell
authors.forename: Rebecca A
authors.initials: RA
authors.lastname: Anderson
authors.forename: Aaron
authors.initials: A
authors.lastname: Goldenberg
authors.forename: Miriam
authors.initials: M
authors.lastname: Kuppermann
authors.forename: Siobhan M
authors.initials: SM
authors.lastname: Dolan
authors.forename: Nancy C
authors.initials: NC
authors.lastname: Rose
authors.forename: Louisa
authors.initials: L
authors.lastname: Stark
mesh_terms: D000293:Adolescent; D000328:Adult; D035843:Biomedical Research; D001800:Blood Specimen Collection; D005260:Female; D017144:Focus Groups; D019538:Health Care Surveys; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D015997:Neonatal Screening; D010290:Parents; D057240:Patient Preference; D036301:Qualitative Research; D018570:Risk Assessment; D055815:Young Adult
keywords: dried bloodspots; education; newborn screening; public health; research