title: Assessing public attitudes on the retention and use of residual newborn screening blood samples: a focus group study.
abstract: This paper discusses attitudes and opinions of a diverse group of participants toward the retention and use of residual newborn blood samples for research. Data were drawn from focus groups based in six states in the USA, and results provide support for the retention and use of residual newborn blood samples for research when parental permission is asked beforehand. However, there were a number of concerns that also warrant attention for the development of policy and maintaining trust with the public, such as timing of permission, use of samples already stored, level of personal control of sample use and education. The results demonstrate the complexity of the topic and the ethical ambiguities associated with the retention and use of residual newborn blood samples.
authors.affiliation: University of Utah, Nursing, Salt Lake City, UT, 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: Aaron
authors.initials: A
authors.lastname: Goldenberg
authors.forename: Michelle H
authors.initials: MH
authors.lastname: Lewis
authors.forename: Louisa
authors.initials: L
authors.lastname: Stark
authors.forename: Matthew
authors.initials: M
authors.lastname: Burbank
authors.forename: Bob
authors.initials: B
authors.lastname: Wong
authors.forename: Jeffrey R
authors.initials: JR
authors.lastname: Botkin
mesh_terms: D001294:Attitude to Health; D035843:Biomedical Research; D001800:Blood Specimen Collection / Q000941:ethics / Q000379:methods*; D017144:Focus Groups; D006266:Health Education; D006801:Humans; D007231:Infant, Newborn; D015997:Neonatal Screening / Q000941:ethics / Q000379:methods*; D010067:Ownership; D011639:Public Opinion; D018570:Risk Assessment; D014481:United States