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.
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.
This article explores ethical considerations related to participatory visual and digital methods for public health research and practice, through the lens of an approach known as "digital storytelling." We begin by briefly describing the digital storytelling process and its applications to public health research and practice. Next, we explore 6 common challenges: fuzzy boundaries, recruitment and consent to participate, power of shaping, representation and harm, confidentiality, and release of materials. We discuss their complexities and offer some considerations for ethical practice. We hope this article serves as a catalyst for expanded dialogue about the need for high standards of integrity and a situated practice of ethics wherein researchers and practitioners reflexively consider ethical decision-making as part of the ongoing work of public health.
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.
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