Using Newborn Screening Bloodspots for Research: Public Preferences for Policy Options

Abstract

OBJECTIVES: 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. METHODS: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. RESULTS: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).CONCLUSIONS: 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. Medical Biology, CHU de Québec, and i Molecular Biology, Medical Biochemistry and Pathology, Université Laval, Montreal, Quebec, Canada; and j Department of Family and Community Medicine, Sinai Health System, University of Toronto, Toronto, Ontario, Canada Dr Miller conceived of and led the study, designed the data collection instruments, and coordinated and supervised data collection and analysis; Dr Hayeems assisted with study design and the design of the data collection instruments, participated in the oversight of data collection and analysis, and drafted the manuscript; Drs Barg, Bombard, and Cressman assisted with study design and the design of the data collection instruments and participated in the oversight of data collection and analysis; Dr Painter-Main conducted the statistical analysis; Drs Wilson,

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