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Health Expect. 2015 Jun;18(3):419-29. doi: 10.1111/hex.12047. Epub 2013 Feb 1.

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

Author information

1
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.

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.

KEYWORDS:

expanded newborn screening; mixed methods; public engagement; public expectations

PMID:
23369110
PMCID:
PMC5060787
DOI:
10.1111/hex.12047
[Indexed for MEDLINE]
Free PMC Article
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