Introduction to the Workbook
It is often assumed that the ethical obligations of a researcher start and end with Research Ethics Board (REB) approval or after a research participant has signed a carefully-constructed informed consent form. However, the materials presented in this "Ethics in Research: A Science Lifecycle Approach" Workbook (the Workbook) introduce a more holistic approach to ethics. This Workbook is not focused specifically on compliance with the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans 2nd Edition (TCPS 2-2014)Footnote 1 or the Tri-Agency Framework: Responsible Conduct of Research (2016) Footnote 2 which of course are essential for researchers at academic institutions in Canada. Instead, the purpose of the Workbook is to foster awareness of the ethical issues that may emerge throughout the entire lifecycle of scientific knowledge, from creation to translation. The materials are primarily intended for a graduate and post-graduate audience, which could include individuals representing a range of different professions (e.g., physicians, nurses) and professional levels (e.g., clinician-scientists, graduate students, research fellows, clinical fellows, etc.). Although written for these audiences, this document may also be of interest to others, in particular, REB administrators and their staff, government and university employees, and students in health- and law-related disciplines.
This Workbook begins by providing an overview of the Canadian Institutes of Health Research (CIHR) four themes of health research (described below), including common ethical issues that may arise generically or individually under each theme complemented by multi-theme and multidisciplinary activities (Section 2). The subsequent section (Section 3) presents the Knowledge-To-Action Ethics (KTA-E) Cycle, which is the conceptual framework for the entire document. This cycle, supported by CIHR, captures the essence of KTA activities of health research, and combines the KTA cycle (Graham et al, 2006)Footnote 3with an ethical lens to address the complete lifecycle of knowledge creation and translation relevant to researchers. It includes a wide variety of elements from data collection to sustaining knowledge use. All subsequent materials included in the Workbook are informed by, and map onto, this conceptual framework.
Section 4 (Hypothetical Scenarios) provides a series of scenarios (case studies). Some of these case studies are based on each of the four CIHR themes while others are multi-themed or intended for non-health researchers. All of the scenarios include a description of the situation; a series of discussion questions; links to relevant ethics guidance documents; notes describing which aspects of the KTA-E cycle the scenario explores; links to relevant articles (where applicable); a scenario shift which provides additional facts to be considered; and a guide to help lead discussion on the scenario. The scenarios and associated discussion questions should foster in-depth deliberation amongst users of this material and are designed to expose the ethical trade-offs and complexities inherent in each case. The topics covered provide an overview of ethical issues that may occur under each theme but are neither exhaustive nor real cases.
Some of the key points that could be raised in discussions are highlighted after each scenario in Section 4. This discussion guide should be viewed as a heuristic tool that helps the user identify some of the most important ethical aspects of the case. It should not be used to narrow discussions of the scenarios or to determine the correct answer to each scenario question. In most cases, there is no single correct answer to the scenario questions. Instead responses are informed by a range of factors and may change depending on how circumstances are interpreted by the reader. Section 5 briefly describes some of the ethics resources mentioned throughout the Workbook.
The Workbook can be used in a group setting or by individuals as a self-study guide
This is an evolving document. We invite users to provide suggestions for improvement and expansion by building their own cases and then submitting them to the CIHR case study database.
Dedicated email for feedback and suggestions for new scenarios submission: firstname.lastname@example.org
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