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Who's Minding The Shop? The Role Of Canadian Research Ethics Boards In The Creation And Uses Of Registries And Biobanks, Elaine Gibson, Kevin Brazil, Michael Coughlin, Claudia Emerson, François Fournier, Lisa Schwartz, Karen Szala-Meneok, Karen Weisbaum, Donald Willison
Who's Minding The Shop? The Role Of Canadian Research Ethics Boards In The Creation And Uses Of Registries And Biobanks, Elaine Gibson, Kevin Brazil, Michael Coughlin, Claudia Emerson, François Fournier, Lisa Schwartz, Karen Szala-Meneok, Karen Weisbaum, Donald Willison
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Background: The amount of research utilizing health information has increased dramatically over the last ten years. Many institutions have extensive biobank holdings collected over a number of years for clinical and teaching purposes, but are uncertain as to the proper circumstances in which to permit research uses of these samples. Research Ethics Boards (REBs) in Canada and elsewhere in the world are grappling with these issues, but lack clear guidance regarding their role in the creation of and access to registries and biobanks.
Methods: Chairs of 34 REBS and/or REB Administrators affiliated with Faculties of Medicine in Canadian universities were …