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A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
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Expectations and values about expanded newborn screening: a public engagement study.

Robin Z Hayeems1, Fiona A Miller, Yvonne Bombard

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

Health Expectations : an International Journal of Public Participation in Health Care and Health Policy
|February 2, 2013
PubMed
Summary

Canadian public supports expanded newborn bloodspot screening (NBS) for serious conditions, prioritizing benefits over potential harms. Most favor screening without explicit consent for treatable disorders, but prefer choice for untreatable ones.

Keywords:
expanded newborn screeningmixed methodspublic engagementpublic expectations

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Area of Science:

  • Public Health
  • Genetics
  • Bioethics

Background:

  • Newborn bloodspot screening (NBS) panels are expanding to include conditions with uncertain treatment outcomes.
  • This expansion has sparked debate regarding population-based screening criteria.

Purpose of the Study:

  • To investigate Canadian public expectations and values concerning NBS inclusion criteria.
  • To explore public views on whether parental consent should be mandatory for NBS.

Main Methods:

  • Conducted eight focus groups (n=60) involving education, deliberative discussion, and pre-/post-questionnaires.
  • Employed both quantitative and qualitative data analysis methods.

Main Results:

  • A majority supported NBS for serious untreatable disorders (95-98%) and for treatable disorders without explicit consent (77-88%).
  • 62% favored unpressured choice for screening untreatable disorders.
  • Participants valued infant treatment benefits and family informational benefits, with concerns about anxiety and stigma depending on disease context.

Conclusions:

  • Public prioritized anticipated benefits of expanded NBS over potential harms.
  • Information provision was seen as key to mitigating harms and enabling informed choice.
  • Caution is advised regarding public enthusiasm potentially driving unlimited uptake of NBS technologies.