Research during an Emergency: A Series of Inquiries Concerning the Outbreak of Severe Acute Respiratory Syndrome (SARS) in Toronto
Year: 2012
Type: dissertation
Abstract: 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.\nResearch 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.\nMethods: 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.\nResults: 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.\nConclusions: 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.
Source: TSpace (University of Toronto)
Author: Catherine M. Tansey
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: green
Funders: Public Health Agency of Canada, Public Health Agency, University of Toronto, National Institutes of Health, Centers for Disease Control and Prevention, Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and Humanities Research Council of Canada, Center for Spintronics Research Network, Tohoku University
OpenAlex ID: W2616562038