In this series of 10 evidence-based fact sheets, we identify key ethical considerations when designing HIV CBR projects and seeking ethics review. We encourage HIV CBR teams to use these fact sheets to assist in project planning and to engage their REBs in a dialogue about a range of strategies for ensuring conventional ethical standards are balanced with diverse community needs.

Ethical issues related to compensation

Recruiting hard to reach individuals and communities in CBR

Managing multiple roles and boundaries

Ethical issues in visual image-based research

Informed consent

Confidentiality in close-knit communities

Community consent in Aboriginal communities

Supporting Peer Research Assistants (PRAs)

Engaging youth in CBR

Learning about illegal, sensitive and stigmatized topics

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Stage 1: Scoping the Landscape. We conducted a Canada-wide assessment of REB documentation for their sensitivity to CBR principles, methodologies, processes and outcomes. Specifically, we reviewed the forms and guidelines of select (Behavioural, Biomedical, Social Sciences, Humanities) research ethics boards (REBs) in the Canadian research context (n = 86). Existing ethics review documentation were evaluated using 30 community-based participatory research-related criteria for their sensitivity to relevant approaches, processes, and outcomes.

Key Findings: Despite using a single guiding ethical framework, REBs across Canada employ a variety of techniques to review research studies and their forms represent varying levels of sensitivity to issues of community level risk, harm, and vulnerability. The vast majority of ethics review forms in Canada are not designed to adequately assess the particular ethical issues common to CBR.

Stage 2: Understanding the Context. We conducted in-depth, semi structured, interviews with 24 research ethics key informants (research ethics board members, ethics office staff, and individuals involved in ethics policy development and reform)from across Canada (compiled from stage 1). We explored participants’ understandings of community-based participatory research approaches, and their insights into the challenges faced by REBs in reviewing CBR projects.

Key Findings: Numerous challenges for making CBR fit within existing review models, forms, and REB cultures exist. Key informants offered examples of providing guidance (talking through ethical issues) and relational review (inviting researcher into meetings, or having offline group discussions with the researcher and certain staff/members). Much of what is understood as “CBR” across the country is synonymous with research involving Aboriginal communities. REB key informants described most researchers as having very narrow understandings of risk, and as being resistant to engage in broader discussions about the ethics of their work. However, they were aware of the concern that ethics review has become overly risk averse - including to the point of paternalism and condescension. Individual key informants demonstrated a high degree of sensitivity to what can be characterized as relational concerns. Existing review structures are not conducive to the discussion of these important issues. Overall, key informants understood that ethics review forms created challenges and barriers for researchers and that the review process continues to be perceived as either a bureaucratic hurdle, or a significant threat to academics. Finally, participants explained that the workload (managing new and existing protocols, organizing meetings, training members/university, developing guidelines and polices,) is overwhelming; simply keeping up with day-to-day demands makes it difficult to imagine new structures or options for CBR ethics review.

Stage 3: Exploring the Ethical Issues. We purposively drew a sample of 25 research projects drawn from HIV CBR grants funded by the Canadian Institutes of Health Research between 1999 and 2006 to reflect regional diversity and the priority populations identified in national HIV policy documents. We separately interviewed the academic and community co-investigators, or their designated project representatives, about ethical issues they encountered. Fifty interviews (with 55 participants) were conducted with a diverse group of academics, researchers housed in community settings, service providers, community advocates, clinicians, graduate students, and funding agency staff. Many of them have worn several “hats” over the course of their careers and some felt that they were both community members and researchers. They were diverse in terms of their disciplinary focus, practice, applied training, lived experience, and history with the HIV movement. Most had worked on multiple HIV CBR projects.

Key findings: Despite working on projects which may raise problems for REBs, participants did not identify ethics review as a major barrier to their work. Overall these were very experienced researchers who knew how to navigate formal ethics review. However, there were a few key exceptions who engaged in protracted exchanges with REBs for complex reasons.. For most participants, ethical dilemmas that emerged throughout their projects fell outside the traditional scope of REB concerns.

Many HIV/AIDS CBR researchers in Canada work with very marginalized populations with complex issues related to health, quality of life, and well-being. As such, CBR researchers identified a broad range of ethical dilemmas facing them in their daily work. These included: managing disclosure/discovery of illegal activity in projects, issues related to maintaining confidentiality, minimizing possible coercion when recruiting through community-based services, triggering reactions to past trauma, and difficulties determining appropriate compensation. In addition, a variety of personal, emotional, moral and relational elements dominated these discussions. Our data illuminate the complexities involved in collaborative research with marginalized communities. It suggests that HIV CBR practitioners are not being adequately prepared by their research and practice training, or by research ethics boards, for the kinds of ethical challenges they encounter. Many are responding ad hoc to complex ethical issues and identified the need to find forums to discuss these issues and learn from each other. As the HIV/AIDS sector becomes ever more sophisticated in this approach to research, challenging ethical tensions are emerging that command discussion and debate beyond what traditional research ethics frameworks offer.

Stage 4: Knowledge Transfer and Exchange. We brought together 33 Canadian HIV and/or CBR experts to share our findings, think through the results and draft 10 evidence-based fact sheets that identify key ethical considerations when designing HIV CBR projects and seeking ethics review. We encourage HIV CBR teams to use these fact sheets to assist in project planning and engage their REBs in a dialogue about the range of strategies required for ensuring conventional ethical standards are balanced with diverse community needs. The fact sheets were simultaneously launched at the 23rd Annual Canadian Conference on HIV/AIDS Research (CAHR, 2014) and the 2014 Community-Campus Partnerships for Health 13th International Conference.

Key findings: Please find all 10 fact sheets drafted here.

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We are a group of Canadian HIV researchers interested in Community-Based Research (CBR) and research ethics.

Co-Principal Investigators

Sarah Flicker, Associate Professor, Faculty of Environmental Studies, York University, Toronto, Ontario

Robb Travers, Associate Professor, Department of Psychology, Faculty of Science, Wilfrid Laurier University, Waterloo, Ontario

Project Lead

Adrian Guta, Post-Doctoral Fellow, Faculty of Arts and Social Sciences, Carleton University, Ottawa, Ontario

Co-Investigators
• Louise Binder, B.A., LL.B, LL.D (hon), O.Ont.,CNETS Canada
• Sarah Fielden, Post-Doctoral Fellow, School of Population and Public Health University of British Columbia
• Jacqueline Gahagan, Professor, School of Health and Human Performance, Dalhousie University
• Claudia Mitchell, Professor, Faculty of Education, McGill University
• Stephanie Nixon, Associate Professor, Department of Physical Therapy, University of Toronto
• Patricia O’Campo, Director, Centre for Research on Inner City Health, St. Michael's Hospital & Professor, Dalla Lana School of Public Health Sciences, University of Toronto
• Michael Wilson, Assistant Professor, Department of Clinical Epidemiology & Biostatistics McMaster University
• Catherine Worthington, Associate Professor, School of Public Health and Social Policy, University of Victoria

Research Assistants

In July, 2013, we held a two day symposium at the Centre for Research on Inner City Health at St. Michael's Hospital in Toronto. Thirty-five stakeholders from across Canada, with expertise in Community-Based Research, ethics, and HIV research came together to provide feedback and to give input into the content and format of each of our evidence-based ethics fact sheets. We thank them for their rich insights and tremendous effort.

Symposium Attendees

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Here are peer-reviewed publications that highlight project results. If you cannot access the papers through your institutional networks, please contact us and we would be happy to provide you with PDF copies for personal use.

Governing Well in Community-Based Research: Lessons from Canada’s HIV Research Sector on Ethics, Publics and the Care of the Self

Abstract: In this paper, we extend Michel Foucault’s final works on the ‘care of the self’ to an empirical examination of research practice in community-based research (CBR). We use Foucault’s ‘morality of behaviors’ to analyze interview data from a national sample of Canadian CBR practitioners working with communities affected by HIV. Despite claims in the literature that ethics review is overly burdensome for non-traditional forms of research, our findings suggest that many researchers using CBR have an ambivalent but ultimately productive relationship with institutional research ethics review requirements. They understand and use prescribed codes, but adapt them in practice to account for the needs of participating community members, members of their research teams and the larger communities with whom they work. Complying with ethics protocols was seen as only the beginning, a minimum standard; our research suggests that the real ethical work happens in the field, where CBR practitioners encounter community members in diverse public roles and must forge ethical consensus across communities. CBR represents an ethical terrain in which practitioners challenge themselves to work differently, and as a result they care for themselves—and others—in ways that often resist the propensity for domination through public health research.

Guta, A., Murray, S. J., Strike, C., Flicker, S., Upshur, R., & Myers, T. (2016). Governing Well in Community-Based Research: Lessons from Canada’s HIV Research Sector on Ethics, Publics and the Care of the Self. Public Health Ethics. doi:10.1093/phe/phw024

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Are We Asking the Right Questions? A Review of Canadian REB Practices in Relation to Community-Based Participatory Research.

Abstract: Access barriers to effective ethics review continue to be a significant challenge for researchers and community-based organizations undertaking community-based participatory research (CBPR). This article reports on findings from a content analysis of select (Behavioural, Biomedical, Social Sciences, Humanities) research ethics boards (REBs) in the Canadian research context (n = 86). Existing ethics review documentation was evaluated using 30 CBPR related criteria for their sensitivity to relevant approaches, processes, and outcomes. A linear regression was conducted to determine whether specific organizational characteristics have an impact on the CBPR sensitivity: (1) region of Canada, (2) type of institution (university or a healthcare organization), (3) primary institutional language (English or French) and (4) national ranking with respect to research intensiveness. While only research intensiveness proved statistically significant (p = .001), we recognize REB protocol forms may not actually reflect how CBPR is reviewed. Despite using a single guiding ethical framework, REBs across Canada employ a variety of techniques to review research studies. We report on these differences and varying levels of sensitivity to CBPR. Finally, we highlight best practices and make recommendations for integrating CBPR principles into existing ethics review.

Guta, A., Wilson, M., Flicker, S., Travers, R., Mason, C., Wenyeve, G. and O'Campo, P. (2010) Are We Asking the Right Questions? A Review of Canadian REB Practices in Relation to Community-Based Participatory Research. Journal of Empirical Research on Human Research Ethics, 5, 35-46.

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"Walking Along Beside the Researcher": How Canadian REBs/IRBs are Responding to the Needs of Community-based Participatory Research.

Abstract: Research ethics boards and institutional review boards (REBs/IRBs) have been criticized for relying on conceptions of research that privilege biomedical, clinical, and experimental designs, and for penalizing research that deviates from this model. Studies that use a community-based participatory research (CBPR) design have been identified as particularly challenging to navigate through existing ethics review frameworks. However, the voices of REB/IRB members and staff have been largely absent in this debate. The objective of this article is to explore the perspectives of members of Canadian university-based REBs/IRBs regarding their capacity to review CBPR protocols. We present findings from interviews with 24 Canadian REB/IRB members, staff, and other key informants. Participants were asked to describe and contrast their experiences reviewing studies using CBPR and mainstream approaches. Contrary to the perception that REBs/IRBs are inflexible and unresponsive, participants described their attempts to dialogue and negotiate with researchers and to provide guidance. Overall, these Canadian REBs/IRBs demonstrated a more complex understanding of CBPR than is typically characterized in the literature. Finally, we situate our findings within literature on relational ethics and explore the possibility of researchers and REBs/IRBs working collaboratively to find solutions to unique ethical tensions in CBPR.

Guta, A., Nixon, S., Gahagan, J. and Fielden, S. (2012) "Walking Along Beside the Researcher": How Canadian REBs/IRBs are Responding to the Needs of Community-based Participatory Research. Journal of Empirical Research on Human Research Ethics, 7, 15-25.

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Resisting the seduction of “ethics creep”: Using Foucault to surface complexity and contradiction in research ethics review.

Abstract: In this paper we examine “ethics creep”, a concept developed by Haggerty (2004) to account for the increasing bureaucratization of research ethics boards and institutional review boards (REB/IRBs) and the expanding reach of ethics review. We start with an overview of the recent surge of academic interest in ethics creep and similar arguments about the prohibitive effect of ethics review. We then introduce elements of Michel Foucault's theoretical framework which are used to inform our analysis of empirical data drawn from a multi-phase study exploring the accessibility of community-engaged research within existing ethics review structures in Canada. First, we present how ethics creep emerged both explicitly and implicitly in our data. We then present data that demonstrate how REB/IRBs are experiencing their own form of regulation. Finally, we present data that situate ethics review alongside other trends affecting the academy. Our results show that ethics review is growing in some ways while simultaneously being constrained in others. Drawing on Foucauldian theory we reframe ethics creep as a repressive hypothesis which belies the complexity of the phenomenon it purports to explain. Our discussion complicates ethics creep by proposing an understanding of REB/IRBs that locates them at the intersection of various neoliberal discourses about the role of science, ethics, and knowledge production.

Guta, A., Nixon, S. A. and Wilson, M. G. (2013) Resisting the seduction of “ethics creep”: Using Foucault to surface complexity and contradiction in research ethics review. Social Science & Medicine, 98, 301-310.

Public Health Research Involving Aboriginal Peoples: Research Ethics Board Stakeholders’ Reflections on Ethics Principles and Research Processes.

Abstract: The second edition (2010) of the Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans (TCPS2) prescribes a set of principles and provisions for engagement with Aboriginal communities. The objective of this study was to explore research ethics board (REB) stakeholder perspectives on the principles and processes of reviewing and conducting public health research with Aboriginal populations and communities. Method: Twenty-four semi-structured qualitative interviews were conducted with REB staff, chairs, members (academic, community and student), and ethics policy key informants with knowledge of the ethics review process, including four Aboriginal participants. Interviews were professionally transcribed verbatim and thematically analyzed using NVivo 8 qualitative data management software. Results: Three dominant themes emerged specific to ethical research practices with Aboriginal communities: 1) the importance of understanding Aboriginal research as a distinct form of research; 2) the unique nature and complexity of negotiating community consent; and 3) the importance of trust and relationship-building in the research process. Conclusion: Thematic results highlight the most prominent issues that REB participants encountered in reviewing research involving Aboriginal peoples. Continued attention needs to be paid to acknowledging and respecting issues of diversity in research involving diverse First Nations, Inuit and Métis peoples. While specific to Aboriginal peoples, the TCPS2 guidelines also illustrate processes and practices that may assist in the development of respectful, collaborative public health research relationships with other historically marginalized populations. Several more papers are under review/being drafted. This section will be updated as they become available.

Flicker, S. and Worthington, C. (2012) Public Health Research Involving Aboriginal Peoples: Research Ethics Board Stakeholders’ Reflections on Ethics Principles and Research Processes. Canadian Journal of Public Health, 103, 19-22.

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