title: Using Newborn Screening Bloodspots for Research: Public Preferences for Policy Options.
abstract: Retaining residual newborn screening (NBS) bloodspots for medical research remains contentious. To inform this debate, we sought to understand public preferences for, and reasons for preferring, alternative policy options.
  
  
  
  We assessed preferences among 4 policy options for research use of residual bloodspots through a bilingual national Internet survey of a representative sample of Canadians. Fifty percent of respondents were randomly assigned to select reasons supporting these preferences. Understanding of and attitudes toward screening and research concepts, and demographics were assessed.
  
  
  
  Of 1102 respondents (94% participation rate; 47% completion rate), the overall preference among policy options was ask permission (67%); this option was also the most acceptable choice (80%). Assume permission was acceptable to 46%, no permission required was acceptable to 29%, and no research allowed was acceptable to 26%. The acceptability of the ask permission option was reduced among participants assigned to the reasoning exercise (84% vs 76%; P = .004). Compared with assume/no permission required, ordered logistic regression showed a significant reduction in preference for the ask permission option with greater understanding of concepts (odds ratio, 0.87; P < .001), greater confidence in science (odds ratio, 0.16; P < .001), and a perceived responsibility to contribute to research (odds ratio, 0.39; P < .001).
  
  
  
  Surveyed Canadians prefer that explicit permission is sought for storage and research use of NBS bloodspots. This preference was diminished when reasons supporting and opposing routine storage, and other policy options, were presented. Findings warrant consideration as NBS communities strategize to respond to shifting legislative contexts.
authors.affiliation: Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada;
authors.forename: Robin Z
authors.initials: RZ
authors.lastname: Hayeems
authors.affiliation: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada; fiona.miller@utoronto.ca.
authors.forename: Fiona A
authors.initials: FA
authors.lastname: Miller
authors.affiliation: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada;
authors.forename: Carolyn J
authors.initials: CJ
authors.lastname: Barg
authors.affiliation: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada; Li Ka Shing Knowledge Institute of St. Michael's Hospital, Toronto, Ontario, Canada;
authors.forename: Yvonne
authors.initials: Y
authors.lastname: Bombard
authors.affiliation: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada;
authors.forename: Celine
authors.initials: C
authors.lastname: Cressman
authors.affiliation: Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada;
authors.forename: Michael
authors.initials: M
authors.lastname: Painter-Main
authors.affiliation: School of Epidemiology, Public Health & Preventive Medicine, Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada;
authors.forename: Brenda
authors.initials: B
authors.lastname: Wilson
authors.affiliation: School of Epidemiology, Public Health & Preventive Medicine, Faculty of Medicine, University of Ottawa, Ottawa, Ontario, Canada;
authors.forename: Julian
authors.initials: J
authors.lastname: Little
authors.affiliation: Departments of Genetics, Children's Hospital of Eastern Ontario, and Pediatrics, University of Ottawa, Ottawa, Ontario, Canada;
authors.forename: Judith
authors.initials: J
authors.lastname: Allanson
authors.affiliation: Centre for Genomics and Policy, Department of Human Genetics, McGill University, Montreal, Quebec, Canada;
authors.forename: Denise
authors.initials: D
authors.lastname: Avard
authors.affiliation: Departments of Medical Biology, CHU de Québec, and Molecular Biology, Medical Biochemistry and Pathology, Université Laval, Montreal, Quebec, Canada; and.
authors.forename: Yves
authors.initials: Y
authors.lastname: Giguere
authors.affiliation: Departments of Genetics, Children's Hospital of Eastern Ontario, and Pediatrics, University of Ottawa, Ottawa, Ontario, Canada;
authors.forename: Pranesh
authors.initials: P
authors.lastname: Chakraborty
authors.affiliation: Department of Family and Community Medicine, Sinai Health System, University of Toronto, Toronto, Ontario, Canada.
authors.forename: June C
authors.initials: JC
authors.lastname: Carroll
mesh_terms: D000328:Adult; D001294:Attitude to Health; D035843:Biomedical Research; D002170:Canada; D003430:Cross-Sectional Studies; D059788:Dried Blood Spot Testing / Q000941:ethics; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D020407:Internet; D008297:Male; D008875:Middle Aged; D015997:Neonatal Screening / Q000941:ethics; D033282:Parental Consent; D019724:Presumed Consent; D011639:Public Opinion; D011640:Public Policy; D011897:Random Allocation; D011795:Surveys and Questionnaires; D055815:Young Adult