Expectations and values about expanded newborn screening: a public engagement study |
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| Authors: | Robin Z. Hayeems PhD Fiona A. Miller PhD Yvonne Bombard PhD Denise Avard PhD June Carroll MD Brenda Wilson MBChB MSc MRCP FFPH Julian Little PhD Pranesh Chakraborty MD Jessica Bytautas BA Yves Giguere MD PhD Judith Allanson MD Renata Axler MBioethics |
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| Affiliation: | 1. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada;2. Yale School of Public Health, Yale University, New Haven, CT, USA;3. The Center for Health Policy and Outcomes, Memorial Sloan‐Kettering Cancer Center, New York, NY, USA;4. Department of Human Genetics, Centre of Genomics and Policy, McGill University, Montreéal, QC, Canada;5. Department of Family and Community Medicine, Mount Sinai Hospital, University of Toronto, Toronto, ON, Canada;6. Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, ON, Canada;7. Newborn Screening Ontario, Department of Pediatrics, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada;8. Department of Pediatrics, University of Ottawa, Ottawa, ON, Canada;9. Department of Medical Biology, Medical Biochemistry and Pathology, Faculty of Medicine, Universiteé Laval, Québec City, QC, Canada;10. Quebec Newborn Blood Screening Program, CHU de Queébec, Québec City, QC, Canada;11. Department of Genetics, Children's Hospital of Eastern Ontario, Ottawa, Canada |
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| Abstract: | Objectives Newborn bloodspot screening (NBS) panels have expanded to include conditions for which treatment effects are less certain, creating debate about population‐based screening criteria. We investigated Canadian public expectations and values regarding the types of conditions that should be included in NBS and whether parents should provide consent. Methods Eight focus groups (FG; n = 60) included education, deliberative discussion and pre‐/post‐questionnaires. Data were analysed quantitatively and qualitatively. Results Quantitatively, the majority supported NBS for serious disorders for which treatment is not available (95–98, 82%). A majority endorsed screening without explicit consent (77–88%) for treatable disorders, but 62% supported unpressured choice for screening for untreatable disorders. Qualitatively, participants valued treatment‐related benefits for infants and informational benefits for families. Concern for anxiety, stigma and unwanted knowledge depended upon disease context and strength of countervailing benefits. Conclusions Anticipated benefits of expanded infant screening were prioritized over harms, with information provision perceived as a mechanism for mitigating harms and enabling choice. However, we urge caution around the potential for public enthusiasm to foster unlimited uptake of infant screening technologies. |
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| Keywords: | expanded newborn screening mixed methods public engagement public expectations |
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