title: Residual newborn screening samples for research: parental information needs for decision-making.
abstract: OBJECTIVE
  The purpose of this research was to identify what types of information expectant parents want to make a decision about the use of their babies' residual dried blood specimens for research.
  
  
  METHODS
  Three focus groups were conducted with pregnant women and their partners and one focus group with prenatal healthcare providers and educators.
  
  
  RESULTS
  Eleven categories of information needs were identified within each focus group.
  
  
  CONCLUSIONS
  Providing sufficient information for parents to make informed choices will be essential to future research with residual dried blood specimens and to maintain public trust with the growing applications of this important public health program.
authors.affiliation: College of Nursing, University of Utah, Salt Lake City, UT, USA.
authors.forename: Erin
authors.initials: E
authors.lastname: Rothwell
authors.forename: Lauren
authors.initials: L
authors.lastname: Clark
authors.forename: Rebecca
authors.initials: R
authors.lastname: Anderson
authors.forename: Jeffrey R
authors.initials: JR
authors.lastname: Botkin
mesh_terms: D000328:Adult; D001290:Attitude; D035843:Biomedical Research / Q000331:legislation & jurisprudence*; D003657:Decision Making; D030881:Disclosure; D059788:Dried Blood Spot Testing; D005260:Female; D017144:Focus Groups; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D015997:Neonatal Screening / Q000331:legislation & jurisprudence*; D033282:Parental Consent / Q000331:legislation & jurisprudence* / Q000523:psychology*; D014481:United States
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