title: Policy issues and stakeholder concerns regarding the storage and use of residual newborn dried blood samples for research.
abstract: Newborn screening is an important public health programs in the United States. Over 4 million infants are screened each year for a number of conditions. There is a growing need for more explicit state policies governing the storage and research use of residual newborn samples. This paper provides an overview of newborn screening and issues related to policies of residual newborn samples as well as attitudes and opinions from stakeholders. Three groups (n = 21) were conducted with stakeholders: an African American group, a Pediatrician group and a Mothers of young children group. Despite the differences between these groups, consistent themes emerged from all groups that may be relevant for policy development governing the storage and use of residual newborn samples. The data from this exploratory study suggest that future policy developments with the newborn screening program warrant further public input on these topics.
authors.affiliation: University of Utah, Salt Lake City, UT 84112, USA. erin.rothwell@nurs.utah.edu
authors.forename: Erin
authors.initials: E
authors.lastname: Rothwell
authors.forename: Rebecca
authors.initials: R
authors.lastname: Anderson
authors.forename: Jeffrey
authors.initials: J
authors.lastname: Botkin
mesh_terms: D001800:Blood Specimen Collection / Q000941:ethics / Q000592:standards; D017144:Focus Groups; D036281:Genetic Research / Q000941:ethics / Q000331:legislation & jurisprudence; D007722:Health Knowledge, Attitudes, Practice; D006805:Human Experimentation / Q000331:legislation & jurisprudence; D006801:Humans; D007231:Infant, Newborn; D015997:Neonatal Screening / Q000941:ethics / Q000592:standards; D033282:Parental Consent / Q000331:legislation & jurisprudence; D011640:Public Policy; D014481:United States
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