Document Detail

Expectations and values about expanded newborn screening: a public engagement study.
MedLine Citation:
PMID:  23369110     Owner:  NLM     Status:  Publisher    
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.
Robin Z Hayeems; Fiona A Miller; Yvonne Bombard; Denise Avard; June Carroll; Brenda Wilson; Julian Little; Pranesh Chakraborty; Jessica Bytautas; Yves Giguere; Judith Allanson; Renata Axler
Publication Detail:
Type:  JOURNAL ARTICLE     Date:  2013-2-1
Journal Detail:
Title:  Health expectations : an international journal of public participation in health care and health policy     Volume:  -     ISSN:  1369-7625     ISO Abbreviation:  Health Expect     Publication Date:  2013 Feb 
Date Detail:
Created Date:  2013-2-1     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  9815926     Medline TA:  Health Expect     Country:  -    
Other Details:
Languages:  ENG     Pagination:  -     Citation Subset:  -    
Copyright Information:
© 2013 Blackwell Publishing Ltd.
Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
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