title: Retention and research use of residual newborn screening bloodspots.
abstract: The storage and use of residual newborn screening dried blood specimens has generated significant controversy in the past 5 years, primarily because of public concerns over the lack of parental knowledge and consent for these activities. State policies addressing the management of these specimens vary widely, and there is currently little guidance to aid new state policy development to address the concerns of program professionals, investigators, and the general public. This article offers guidance for state policy based on multiple sources of data, including public attitudes, professional statements, state experience, and an analysis of the ethical, social, legal, and biomedical issues from a multidisciplinary group of scholars. This guidance will be useful for state programs that seek to develop policies that are informed by a contemporary analysis of the key ethical, legal, and social aspects of this practice. This article represents the work of the authors and does not represent American Academy of Pediatrics policy.
authors.affiliation: University of Utah, Salt Lake City, Utah 84112, USA. jeffrey.botkin@hsc.utah.edu
authors.forename: Jeffrey R
authors.initials: JR
authors.lastname: Botkin
authors.forename: Aaron J
authors.initials: AJ
authors.lastname: Goldenberg
authors.forename: Erin
authors.initials: E
authors.lastname: Rothwell
authors.forename: Rebecca A
authors.initials: RA
authors.lastname: Anderson
authors.forename: Michelle Huckaby
authors.initials: MH
authors.lastname: Lewis
mesh_terms: D035843:Biomedical Research / Q000941:ethics / Q000592:standards*; D001800:Blood Specimen Collection / Q000941:ethics / Q000592:standards*; D059788:Dried Blood Spot Testing / Q000941:ethics / Q000592:standards*; D019983:Guideline Adherence / Q000941:ethics / Q000592:standards*; D006291:Health Policy; D006801:Humans; D007231:Infant, Newborn; D015997:Neonatal Screening / Q000941:ethics / Q000592:standards*; D033282:Parental Consent / Q000941:ethics; D014481:United States