title: Concerns of newborn blood screening advisory committee members regarding storage and use of residual newborn screening blood spots.
abstract: OBJECTIVE
  We assessed attitudes and opinions of members of newborn blood screening (NBS) advisory committees regarding the storage and secondary research use of residual specimens from NBS.
  
  
  METHODS
  We conducted focus groups in 2008 and 2009 with NBS advisory committees (4 focus groups; n = 39 participants) in the Mountain States region (i.e., AZ, CO, MT, NM, NV, TX, UT, and WY).
  
  
  RESULTS
  Participants identified several challenges to implementing policies for storage of and research on residual newborn blood specimens. Themes that emerged from the data were public health relevancy; improvement of parental knowledge; impact of enhanced parental involvement; concerns over ownership, privacy, and confidentiality; identification of secondary research uses; and role of advisory committees.
  
  
  CONCLUSIONS
  Participants indicated that secondary uses of residual specimens entailed opportunities for improvements in NBS programs but also carried significant risks for their programs. Addressing concerns from stakeholders will be necessary for state-level adoption of national recommendations.
authors.affiliation: College of Nursing, University of Utah, Salt Lake City, UT 84112, USA. erin.rothwell@nurs.utah.edu
authors.forename: Erin W
authors.initials: EW
authors.lastname: Rothwell
authors.forename: Rebecca A
authors.initials: RA
authors.lastname: Anderson
authors.forename: Matthew J
authors.initials: MJ
authors.lastname: Burbank
authors.forename: Aaron J
authors.initials: AJ
authors.lastname: Goldenberg
authors.forename: Michelle Huckaby
authors.initials: MH
authors.lastname: Lewis
authors.forename: Louisa A
authors.initials: LA
authors.lastname: Stark
authors.forename: Bob
authors.initials: B
authors.lastname: Wong
authors.forename: Jeffrey R
authors.initials: JR
authors.lastname: Botkin
mesh_terms: D026683:Advisory Committees; D035843:Biomedical Research / Q000379:methods; D001800:Blood Specimen Collection / Q000941:ethics; D003219:Confidentiality; D017144:Focus Groups; D006266:Health Education / Q000379:methods; D006801:Humans; D007231:Infant, Newborn; D015997:Neonatal Screening / Q000941:ethics*; D010067:Ownership; D010290:Parents; D011634:Public Health