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Using Newborn Screening Bloodspots for Research: Public Preferences for Policy Options.

Robin Z Hayeems1, Fiona A Miller2, Carolyn J Barg3

  • 1Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada;

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Summary

Canadians prefer explicit permission for using newborn screening (NBS) bloodspots in research. This preference decreased when people considered different policy options and the reasons behind them.

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Area of Science:

  • Public Health
  • Bioethics
  • Genetics

Background:

  • Newborn screening (NBS) bloodspots are retained for medical research, a practice that is ethically debated.
  • Understanding public opinion is crucial for developing policies on the use of these residual biological samples.

Purpose of the Study:

  • To investigate public preferences for different policy options regarding the research use of residual NBS bloodspots.
  • To identify the reasons behind public preferences for these policy options.

Main Methods:

  • A bilingual national Internet survey was conducted with a representative sample of Canadians.
  • Participants were presented with four policy options for residual bloodspot research use.
  • Respondents indicated their preferences and, for some, provided reasons, while also assessing their understanding of screening and research concepts.

Main Results:

  • The majority of respondents preferred the 'ask permission' policy (67%) and found it most acceptable (80%).
  • Other options, such as 'assume permission' (46%), 'no permission required' (29%), and 'no research allowed' (26%), were less acceptable.
  • Preference for 'ask permission' decreased with increased understanding of concepts, confidence in science, and a sense of responsibility to contribute to research.

Conclusions:

  • Canadians largely favor explicit consent for the storage and research use of NBS bloodspots.
  • Presenting detailed information and alternative policy options can diminish the preference for explicit consent.
  • These findings are important for NBS programs as they adapt to evolving legislative landscapes and public expectations.