Sarah Flicker

Ethical Dilemmas in Community-Based Participatory Research: Recommendations for Institutional Review Boards

National and international codes of research conduct have been established in most industrialized nations to ensure greater adherence to ethical research practices. Despite these safeguards, however, traditional research approaches often continue to stigmatize marginalized and vulnerable communities. Community-based participatory research (CBPR) has evolved as an effective new research paradigm that attempts to make research a more inclusive and democratic process by fostering the development of partnerships between communities and academics to address community-relevant research priorities. As such, it attempts to redress ethical concerns that have emerged out of more traditional paradigms. Nevertheless, new and emerging ethical dilemmas are commonly associated with CBPR and are rarely addressed in traditional ethical reviews. We conducted a content analysis of forms and guidelines commonly used by institutional review boards (IRBs) in the USA and research ethics boards (REBs) in Canada. Our intent was to see if the forms used by boards reflected common CBPR experience. We drew our sample from affiliated members of the US-based Association of Schools of Public Health and from Canadian universities that offered graduate public health training. This convenience sample (n = 30) was garnered from programs where application forms were available online for download between July and August, 2004. Results show that ethical review forms and guidelines overwhelmingly operate within a biomedical framework that rarely takes into account common CBPR experience. They are primarily focused on the principle of assessing risk to individuals and not to communities and continue to perpetuate the notion that the domain of “knowledge production” is the sole right of academic researchers. Consequently, IRBs and REBs may be unintentionally placing communities at risk by continuing to use procedures inappropriate or unsuitable for CBPR. IRB/REB procedures require a new framework more suitable for CBPR, and we propose alternative questions and procedures that may be utilized when assessing the ethical appropriateness of CBPR.

Ethical Dilemmas in Research on Internet Communities

There has been a rapid growth in the number of articles using Internet data sources to illuminate health behavior. However, little has been written about the ethical considerations of online research, especially studies involving data from Internet discussion boards. Guidelines are needed to ensure ethical conduct. In this article, the authors examine how a youth-focused research program negotiated ethical practices in the creation of its comprehensive health site and online message board. They address three situations in which ethical predicaments arose: (a) enrolling research participants, (b) protecting participants from risk or harm, and (c) linking public and private data. Drawing on the ethical principles of autonomy, nonmaleficence, justice, and beneficence, the authors present practical guidelines for resolving ethical dilemmas in research on Internet communities.

Who benefits from community-based participatory research? A case study of the positive youth project.

Community-based participatory research (CBPR) has evolved as a popular new paradigm in health research. This shift is exciting, yet there is still much to discover about how various stakeholders are affected. This article uses a critical social science perspective to explore who benefits from these changes through an analysis of a CBPR case study (The Positive Youth Project). Two major categories of beneficiaries emerged: the research itself and the partner-stakeholders. The benefits, however, were not gained without substantial human resource investment, nor were they necessarily equitably spread. Participation costs included heavy demands of time, an added burden of work, frustration with the process, missing other opportunities, risking loss of anonymity, and loss of control. Care needs to be taken to ensure that concrete benefits accrue for all project partners and costs are minimized. Another way of framing benefits is to look at the community capacities built to address future health and social issues.

Governing through community allegiance: a qualitative examination of peer research in community-based participatory research

The disappointing results of many public health interventions have been attributed in part to the lack of meaningful community engagement in the planning, implementation, and evaluation of these initiatives. Community-based participatory research (CBPR) has emerged as an alternative research paradigm that directly involves community members in all aspects of the research process. Their involvement is often said to be an empowering experience that builds capacity. In this paper, we interrogate these assumptions, drawing on interview data from a qualitative study investigating the experiences of 18 peer researchers (PRs) recruited from nine CBPR studies in Toronto, Canada. These individuals brought to their respective projects experience of homelessness, living with HIV, being an immigrant or refugee, identifying as transgender, and of having a mental illness. The reflections of PRs are compared to those of other research team members collected in separate focus groups. Findings from these interviews are discussed with an attention to Foucault’s concept of ‘governmentality’, and compared against popular community-based research principles developed by Israel and colleagues. While PRs spoke about participating in CBPR initiatives to share their experience and improve conditions for their communities, these emancipatory goals were often subsumed within corporatist research environments that limited participation. Overall, this study offers a much-needed theoretical engagement with this popular research approach and raises critical questions about the limits of community engagement in collaborative public health research.

Survey Design From the Ground Up: Collaboratively Creating the Toronto Teen Survey

The Toronto Teen Survey is a community-based participatory research study whose aim is to gather information on the accessibility and relevance of sexual health services for diverse groups of urban youth (13 to 17 years of age). This information will be used to develop a proactive, citywide strategy to improve sexual health outcomes for Toronto adolescents. In this article, the authors focus on the processes of collaboratively developing a survey tool with youth, academics, and community stakeholders. An overview of the project and examples from the design stage are provided. In addition, recommendations are given toward developing best practices when working with young people on research and survey design.

The DEPICT model for participatory qualitative health promotion research analysis piloted in Canada, Zambia and South Africa

Health promotion researchers are increasingly conducting Community-Based Participatory Research in an effort to reduce health disparities. Despite efforts towards greater inclusion, research teams continue to regularly exclude diverse representation from data analysis efforts. The DEPICT model for collaborative qualitative analysis is a democratic approach to enhancing rigour through inclusion of diverse stakeholders. It is broken down into six sequential steps. Strong leadership, coordination and facilitation skills are needed; however, the process is flexible enough to adapt to most environments and varying levels of expertise. Including diverse stakeholders on an analysis team can enrich data analysis and provide more nuanced understandings of complicated health problems.

Peer Sexual Health Education: Interventions for Effective Programme Evaluation.

Peer education is used as a health promotion strategy in a number of areas, including sexual health. Although peer education programmes have been around for some time, published systematic evaluations of youth sexual health peer education programmes are rare. This article discusses the advantages and disadvantages of youth sexual health peer education programmes, the importance of programme evaluation, and strategies for developing effective programme evaluation tools. The value of conducting both process (programme delivery) and outcome (programme impact) evaluation is examined as well as methods for conducting these forms of assessment. Considering the wide range of peer education programmes and the diversity of communities served, the article concludes that the creation of a single evaluation method may be an impossible task. To address this challenge, principles for effective programme evaluation are proposed with tools that can be tailored to the unique goals of specific sexual health organizations.

Community-based research in AIDS-service organizations: what helps and what doesn't?

Abstract Background. Community-based research (CBR) approaches have become commonplace in many North American HIV communities. In many large urban centers, AIDS-service organizations (ASOs) have become active research hubs, advocating for research dollars in community settings. While ASOs have historically integrated local knowledge into their prevention, care and advocacy initiatives, many are now initiating or collaborating in research which addresses emerging issues encountered in practice with clients. Objectives. To investigate barriers and facilitating factors for ASO engagement in CBR. Methods. We conducted a survey (n=39) and one-on-one semi-structured telephone interviews (n=25) with executive directors and CBR coordinators from ASOs in Ontario, Canada. The survey queried four major areas of interest (organizational demographics, ASO CBR activities, potential barriers and facilitators for CBR engagement, and what roles stakeholders play in CBR initiatives). The interviews focused on exploring these issues in greater depth as well as understanding barriers and facilitating factors to people living with HIV/AIDS engaging in CBR. Results. ASOs in Ontario are moderately supportive of CBR in their organizations. However, our survey and one-on-one interviews indicate that funding and organizational resources are both important barriers and facilitators to ASO involvement in CBR projects. Attaining access to research ethics boards and concerns that CBR results will not be acted upon also emerged as barriers to CBR, particularly once funds and organizational resources have been attained. Initiatives designed to enhance the skills of research team members emerged as an another important facilitator. Conclusion. Increasing emphasis from program funders on more rigorous evaluation and accountability, coupled with pull from increasingly empowered communities demanding much more active roles in setting research agendas, means that CBR is likely here to stay. Attending to barriers and facilitators will help with enhanced ASO engagement in CBR.

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

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.

Seeking Safer Sexual Spaces: Queer and Trans Young People Labeled with Intellectual Disabilities and the Paradoxical Risks of Restriction

Young lesbian, gay, bisexual, and transgender (LGBT) people labeled with intellectual disabilities have unique sexual health needs that are not being met. Denial by others of their right to pleasure and the exercise of heightened external control over their sexuality are commonplace. Current research indicates that these youth are at heightened risk for compromised sexual health. This study aimed to explore the ways in which social and environmental conditions influence vulnerability to adverse sexual health outcomes for this population. We used a community-based research approach to conduct qualitative interviews and focus groups with 10 young LGBT people (aged 17–26) labeled with intellectual disabilities. Participants reported multiple limitations on their autonomy that resulted in having sex in places where they did not feel comfortable and were unlikely to practice safer sex. Attempts by authority figures to protect youth through limits on their autonomy may be unintentionally leading to negative sexual health outcomes.