title: Citizens' values regarding research with stored samples from newborn screening in Canada.
abstract: OBJECTIVE
  Newborn screening (NBS) programs may store bloodspot samples and use them for secondary purposes. Recent public controversies and lawsuits over storage and secondary uses underscore the need to engage the public on these issues. We explored Canadian values regarding storage and use of NBS samples for various purposes and the forms of parental choice for anonymous research with NBS samples.
  
  
  METHODS
  We conducted a mixed-methods, public engagement study comprising 8 focus groups (n = 60), an educational component, deliberative discussion, and pre- and post-questionnaires assessing knowledge and values toward storage and parental choice.
  
  
  RESULTS
  Canadian citizens supported the storage of NBS samples for quality control, confirmatory diagnosis, and future anonymous research (>90%). There was broad support for use of NBS samples for anonymous research; however, opinions were split about the extent of parental decision-making. Support for a "routinized" approach rested on trust in authorities, lack of concern for harms, and an assertion that the population's interest took priority over the interests of individuals. Discomfort stemmed from distrust in authorities, concern for harms, and prioritizing individual interests, which supported more substantive parental choice. Consensus emerged regarding the need for greater transparency about the storage and secondary use of samples.
  
  
  CONCLUSIONS
  Our study provides novel insights into the values that underpin citizens' acceptance and discomfort with routine storage of NBS samples for research, and supports the need to develop well-designed methods of public education and civic discourse on the risks and benefits of the retention and secondary use of NBS samples.
authors.affiliation: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada.
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Bombard
authors.forename: Fiona A
authors.initials: FA
authors.lastname: Miller
authors.forename: Robin Z
authors.initials: RZ
authors.lastname: Hayeems
authors.forename: June C
authors.initials: JC
authors.lastname: Carroll
authors.forename: Denise
authors.initials: D
authors.lastname: Avard
authors.forename: Brenda J
authors.initials: BJ
authors.lastname: Wilson
authors.forename: Julian
authors.initials: J
authors.lastname: Little
authors.forename: Jessica P
authors.initials: JP
authors.lastname: Bytautas
authors.forename: Judith
authors.initials: J
authors.lastname: Allanson
authors.forename: Renata
authors.initials: R
authors.lastname: Axler
authors.forename: Yves
authors.initials: Y
authors.lastname: Giguere
authors.forename: Pranesh
authors.initials: P
authors.lastname: Chakraborty
mesh_terms: D000293:Adolescent; D000328:Adult; D035843:Biomedical Research; D001800:Blood Specimen Collection; D002170:Canada; D003431:Cross-Cultural Comparison; D017144:Focus Groups; D006266:Health Education; D006801:Humans; D007231:Infant, Newborn; D008875:Middle Aged; D015997:Neonatal Screening / Q000331:legislation & jurisprudence*; D010174:Pamphlets; D033282:Parental Consent / Q000331:legislation & jurisprudence*; D018907:Privacy / Q000331:legislation & jurisprudence*; D011639:Public Opinion; D011786:Quality Control; D012945:Social Values