Comprehensive Assessment Oversight Dialog: Canadian Ethical Data Review Boards Project
The Information Accountability Foundation (IAF)
Martin Abrams, Executive Director
In this project, the IAF looked at a commonized oversight process for assessments that capture the attributes of research ethics boards (REBs). As part of this project, the IAF conducted research on how REBs operate, discussed commonized processes with a group of businesses, and conducted a multi-stakeholder session with regulators, academics, advocates and business.
The IAF began the research with the key stakeholder concerns that a business will place its interests ahead of those of individual and societal stakeholders, some organizations conducting assessments will not have the skill sets to assure competent assessments, and big data processes will not be visible to individuals in a manner that will lead to consumer complaints that will trigger investigations.
Drawing upon REB attributes, to address these concerns, the IAF concluded in the Report: (1) having a standard to measure against for the nature of assessments, having a structure in which those assessments take place, and having transparency regarding the process and results are necessary to capture the virtues of REBs required to build trust; (2) no single solution will work for all organizations and situations (for example, solutions that may work for the most complex and sensitive processing in large organizations based on commonized guidance may not be scalable for smaller organizations that need to assess processing beyond expectations); (3) for large or more active organizations the commonized process could be an internal ethical data review board constructed based on commonized guidance.
Project deliverables are available in the following language(s):
OPC Funded Project
This project received funding support through the Office of the Privacy Commissioner of Canada’s Contributions Program. The opinions expressed in the summary and report(s) are those of the authors and do not necessarily reflect those of the Office of the Privacy Commissioner of Canada. Summaries have been provided by the project authors. Please note that the projects appear in their language of origin.
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