The Role of Canadian Research Ethics Boards in Registries and Biobanks
Author Information
Author(s): Gibson Elaine, Brazil Kevin, Coughlin Michael D, Emerson Claudia, Fournier Francois, Schwartz Lisa, Szala-Meneok Karen V, Weisbaum Karen M, Willison Donald J
Primary Institution: Health Law Institute, Dalhousie University
Hypothesis
What is the role of Research Ethics Boards (REBs) in the creation and use of registries and biobanks?
Conclusion
Participants showed greater awareness and concern regarding biobanks compared to registries, highlighting the need for clearer guidance for REBs.
Supporting Evidence
- Thirty interviews were conducted with a response rate of 88%.
- Twenty-three of twenty-nine sites required patient consent for registry data.
- All sites agreed that patient consent was needed for blood samples in the biobank.
Takeaway
This study looked at how Canadian ethics boards handle health data collections called registries and biobanks, finding that they are more careful with biobanks.
Methodology
Interviews with Chairs and/or Administrators of 34 REBs were conducted using structured questions about diabetes-related scenarios.
Potential Biases
Responses may have been influenced by what interviewees thought the interviewer wanted to hear.
Limitations
The study was based on hypothetical scenarios, which may not reflect real-life practices.
Participant Demographics
Chairs and Administrators of REBs from Canadian universities.
Digital Object Identifier (DOI)
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