Background: Researchers and research ethics boards (REBs) in Toronto were unprepared for the SARS outbreak. There is a paucity of literature about how to review emergency-related protocols during a public emergency and so REBs had no guidance about how to review SARS-related protocols.
Research questions: The thesis presents four related research inquiries based on the following four objectives: 1) to conduct a comprehensive evaluation of the one-year outcomes in SARS survivors; 2) to explore the ethical issues that emerged during the conduct of the SARS outcomes study; 3) to understand the impact of the SARS outbreak on research ethics review (RER) of SARS-related protocols; and 4) to propose a new framework of RER for use during public emergencies.
Methods: Included in this thesis are an observational study, an analytic reflection, a grounded theory study, and a translation of the knowledge gained in the first three parts of the thesis into a framework of RER that is meaningful and actionable.
Results: Part I describes the recovery made by SARS survivors from their acute illness. In part II, I explore ethical issues that arose during the conduct of the study including: social and scientific value and scientific validity of emergency research, and respect for privacy and confidentially. Part III presents a theory about how researchers, REBs and public health interacted during the outbreak and in part IV I propose ‘emergency review’ a framework for RER for use during a publicly declared emergency.
Conclusions: The natural experiment that was the SARS outbreak in Toronto revealed the vulnerabilities in the structure of REBs. I highlight three conclusions which are the highest priority to provide further development in this field. These are: 1) when REBs, researchers and public health are not effectively communicating during a public emergency, the work of each group is disrupted; 2) institutional conflict of interest occurred during the research ethics review of SARS-related protocols and may be amplified during a public emergency and 3) there is a need for a multi-site review structure that could be activated on short notice to review protocols related to the emergency situation.
| Identifer | oai:union.ndltd.org:TORONTO/oai:tspace.library.utoronto.ca:1807/33863 |
| Date | 06 December 2012 |
| Creators | Tansey, Catherine M. |
| Contributors | Herridge, Margaret, Lavery, Jim |
| Source Sets | University of Toronto |
| Language | en_ca |
| Detected Language | English |
| Type | Thesis |
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