An integral part of the institutional review board (IRB) formula, the role of community member is also often misunderstood. During this webinar, faculty with a wide spectrum of experience came together to discuss the role, responsibilities, and experiences of community IRB members, with special emphasis made on enhancing community member participation.
The U.S. Presidential Commission for the Study of Bioethical Issues has recently suggested that enhancements to engagement strategies for host communities during international research studies could improve the protection of both the individual research participants and their communities. While community engagement is increasingly recommended and mandated as part of ethical research both domestically and abroad, there is little agreement among stakeholders about what constitutes meaningful engagement, and how it reduces the risk of harm for research participants and the communities of which they are a part.
This webinar focused on community engagement in research conducted abroad and its relevance to the work of human research protections professionals. After defining key ideas and terminology, our esteemed faculty examined three questions central to the design and assessment of ethical community engagement strategies.
- Why engage communities?
- During this part of the presentation, the speakers will explore the ethical value of community engagement by examining the kinds of research harms that arise in the international context and explaining how community engagement offers protections from these harms.
- Who should be engaged?
- Engaging communities in research requires deciding what constitutes the relevant “community” for any research study. In this segment, the speakers will share ideas about the meaning of "community" for research, and share strategies for identifying the relevant community for any specific research study.
- How should the community be engaged?
- During this segment, the presenters will discuss key elements of meaningful community engagement programs, to guide institutional review boards (IRBs) in assessing research proposals and researchers in designing and implementing programs.
Who should attend?
This intermediate-level webinar was of interest to all those who design, conduct, or review human subject research with a community engagement component, either domestically or abroad.
Jim Lavery, MSc, PhD, is a research scientist in the Centre for Research on Inner City Health (CRICH) and Centre for Global Health Research (CGHR), Keenan Research Centre of the Li Ka Shing Knowledge Institute, St. Michael's Hospital, and an associate professor in the Dalla Lana School of Public Health and Joint Centre for Bioethics at the University of Toronto. Jim received MSc and PhD degrees from the Institute of Medical Sciences and Centre for Bioethics at the University of Toronto, and a post-doctoral fellowship in applied ethics and health policy from the Social Sciences and Humanities Research Council and Canadian Health Services Research Foundation, which he held at the Queen's University Health Policy Research Unit. Jim then spent three years at the Fogarty International Center, and Warren G. Magnuson Clinical Center Department of Clinical Bioethics, both at the National Institutes of Health (NIH) in Bethesda, MD. While at the NIH he worked on ethical and regulatory issues in international research, and served as a chair of the Department of Health and Human Services (DHHS) Working Group on Equivalent Protections that issued its report in 2003. He was a member of the Canadian Federal Interagency Advisory Panel on Research Ethics from 2005 to 2011.
Jim was the co-principal investigator of the Ethical, Social, and Cultural Program for the Bill & Melinda Gates Foundation’s Grand Challenges in Global Health initiative from 2005 to 2010. He now leads a component of the ESC Program focusing on community engagement in global health research. He also leads the Brokered Dialogue program, a new public engagement research initiative that facilitates film-based dialogues to generate insights and opportunities for public engagement for controversial social issues.
Katherine King, MSc, PhD, is a research associate at the Li Ka Shing Knowledge Institute at St. Michael’s Hospital in Toronto where she works at the Ethical, Social, and Cultural Program for the Bill & Melinda Gates Foundation’s Global Health Program. She received her PhD in Political Philosophy from the London School of Economics and Political Science, and an MSc in Neuroscience from the University of Oxford. Most recently, she spent two years as a Greenwall Fellow at Johns Hopkins and Georgetown Universities. Her current research interests are in the normative foundations of research ethics and community engagement, as well as ethical considerations in food policy.
Following the webinar, we asked the presenters to answer some of the remaining questions that came in from webinar participants, for Ampersand.
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