Introduction to the WorkbookIt is often assumed that the ethical obligations of a researcher start and end with Research Ethics Board (REB) approval or after a research participant signs a carefully constructed informed consent form. However, the materials presented in this "Ethics in Research: A Science Lifecycle Approach" workbook introduce a more holistic approach to ethics. The workbook is not focused specifically on compliance with the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2),Footnote 1 which of course is 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 written for a graduate and post-graduate audience, which could include individuals representing a range of different professions (i.e., physicians, nurses) and professional levels (i.e., clinician-scientists, graduate students, research fellows, clinical fellows, etc.). Although written for this audience, it may also have a more broad interest.
The workbook begins by providing an overview of the four themes of the Canadian Institutes of Health Research (CIHR) funded health research including common ethical issues that may arise under each theme (Section 2). The following section presents the Knowledge-To-Action Ethics (KTA-E) Cycle, which is the conceptual framework for the entire document (Section 3). This cycle combines the KTA cycle (Graham et al, 2006.) with an ethical lens to address the complete lifecycle of knowledge creation and translation relevant to researchers and 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 provides a series of scenarios built around the four themes of CIHR funded health research. There are four modules to represent each of these themes. All of the scenarios include a description of the case; 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 tradeoffs and complexities inherent in each case. The topics covered provide an overview of ethical issues that may occur under each theme but are not intended to be either true or exhaustive.
Some of the key points that could be raised in discussions about the scenario questions from Section 4 are highlighted after each scenario. This discussion guide should be viewed merely as a discussion-aiding tool that helps to identify only a few 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 should be used in a manner that best suits the user. In other words, it can be used in a group setting or by individuals as a self-study guide. We consider this workbook to be 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 for others to employ.
Dedicated email for feedback and new scenarios submission: firstname.lastname@example.org.
Updated versions of this document are downloadable at the CIHR website.
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