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

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


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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Canada
  • Female
  • Focus Groups
  • Humans
  • Infant, Newborn
  • Informed Consent / psychology
  • Male
  • Middle Aged
  • Neonatal Screening / psychology*
  • Parents / psychology
  • Patient Acceptance of Health Care / psychology
  • Surveys and Questionnaires
  • Young Adult