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Citizens' values regarding research with stored samples from newborn screening in Canada
Yvonne Bombard1, Fiona A Miller, Robin Z Hayeems
1Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada.
Pediatrics
|January 18, 2012
Summary
Canadian citizens largely support storing newborn screening (NBS) bloodspot samples for research and quality control. However, transparency and public education are crucial for addressing concerns about parental choice and secondary use of NBS samples.
Area of Science:
- Public Health
- Bioethics
- Genetics
Background:
- Newborn screening (NBS) programs collect bloodspot samples for diagnostic purposes.
- Secondary use of these samples for research raises public and ethical concerns.
- Previous controversies highlight the need for public engagement on NBS sample storage and use.
Purpose of the Study:
- To explore Canadian public values regarding NBS bloodspot sample storage and secondary uses.
- To investigate parental preferences for decision-making regarding anonymous research with NBS samples.
- To understand public perspectives on transparency and trust in NBS programs.
Main Methods:
- A mixed-methods public engagement study was conducted.
- Included 8 focus groups (n=60) with an educational component and deliberative discussion.
- Pre- and post-questionnaires assessed knowledge and values related to NBS sample storage and parental choice.
Main Results:
- Over 90% of Canadians supported storing NBS samples for quality control, diagnosis, and anonymous research.
- Broad support existed for using NBS samples in anonymous research, with divided opinions on the extent of parental choice.
- Public support for routine storage was linked to trust in authorities and prioritizing population interests, while discomfort arose from distrust and prioritizing individual interests.
- A consensus emerged on the need for increased transparency regarding NBS sample storage and secondary use.
Conclusions:
- Citizen values regarding NBS sample retention and secondary use for research are complex.
- Public acceptance is influenced by trust, perceived risks, and the balance between individual and population interests.
- Effective public education and discourse are essential for addressing the ethical considerations of NBS sample retention and secondary use.
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