Expectations and values about expanded newborn screening: a public engagement study.

摘要: Objectives Newborn bloodspot screening (NBS) panels have expanded to include conditions for which treatment effects are less certain, creating debate about population-based criteria. We investigated Canadian public expectations and values regarding the types of that should be included in NBS whether parents provide consent. Methods Eight focus groups (FG; n = 60) education, deliberative discussion pre-/post-questionnaires. Data were analysed quantitatively qualitatively. Results Quantitatively, majority supported serious disorders is not available (95–98, 82%). A endorsed without explicit consent (77–88%) treatable disorders, but 62% unpressured choice untreatable disorders. Qualitatively, participants valued treatment-related benefits infants informational families. Concern anxiety, stigma unwanted knowledge depended upon disease context strength countervailing benefits.