This paper focuses on ethics in community-based participatory research (CBPR) from inception to post-publication. Central to CBPR is a collaborative, partnership approach that recognises the strengths of partners and engages their distinctive voice and knowledge in the research process. While the ethical complexities that arise in the course of research practice in CBPR can transcend individual projects, they are also grounded in the particularity of the project, community, and research partners. This paper reflects on the experiences of two participatory social (...) policy research projects on housing in Ireland, conducted over the past three years. These projects involved collaborating with older people living in rural areas nationwide and with residents of small communities on offshore islands. The paper explores the ethics of engagement (regarding methods of involvement and access), and the ethics of representation (incorporating the depiction and sharing of research findings) and argues that researchers must pay attention to the specificity of each project and be alive to generating an organic research ethics in how research is set up, conducted, represented, and disseminated. In so doing, we can better foster agency and authenticity in the relationships developed throughout research processes and reflect on and meet shared values and responsibilities. (shrink)

Healthcare user fees present an important barrier for accessing services for the poorest (indigents) in Burkina Faso and selective removal of fees has been incorporated in national healthcare planning. However, establishing fair, effective and sustainable mechanisms for the removal of user fees presents important challenges. A participatory action-research project was conducted in Ouargaye, Burkina Faso, to test mechanisms for identifying those who are indigents, and funding and implementing user fee removal. In this paper, we explore stakeholder perceptions of ethical considerations (...) relating to participation and partnership arising in the action-research. (shrink)

This study explores building code negotiation between straw bale advocates’ ecology-oriented values and health and safety values that underlie building codes in general by focusing on how values and ethics are articulated and embodied in practice and discourse in the two states where straw bale building standards were first initiated. The local, contingent nature of interactions, grounded in particular practices, material culture, and written and visual texts in which values were embedded, coupled with organizational factors contributed to strategies for a (...) prescriptive code in Arizona and for a performance code in New Mexico. Examination of situated practice in standards development for unconventional materials that may not fit well with practices based on conventional technologies sheds light on how norms associated with the ethics of safe building are enmeshed in existing practice where they can be taken for granted as ethical absolutes and illustrates the kinds of insights available through paying attention to ethics in practice. (shrink)

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.‘…there are different ways to “conduct oneself” morally, different ways for the acting individual to operate, not just as an agent, but as an ethical subject of action.’ (Foucault, 1985: 26). (shrink)

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.‘…there are different ways to “conduct oneself” morally, different ways for the acting individual to operate, not just as an agent, but as an ethical subject of action.’ (Foucault, 1985: 26). (shrink)

BackgroundImplementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised controlled trials.DiscussionImplementation science commonly involves the partnership of researchers and stakeholders, attempting to understand and encourage uptake of completed or piloted research. A co-creation approach involves collaboration between researchers and end users from the onset, in question framing, research design and delivery, (...) and influencing strategy, with implementation and broader dissemination strategies part of its design from gestation. A defining feature of co-creation is its emergent and adaptive nature, making detailed pre-specification of interventions and outcome measures impossible. This methodology sits oddly with ethics committee protocols that require precise pre-definition of interventions, mode of delivery, outcome measurements, and the role of study participants. But the strict requirements of ethics committees were developed for a purpose – to protect participants from harm and help ensure the rigour and transparency of studies. We propose some guiding principles to help square this circle. First, ethics committees should acknowledge and celebrate the diversity of research approaches, both formally and informally ; without active support, their members may not understand or value participatory designs. Second, ground rules should be established for co-design applications and communicated to committee members and stakeholders. Third, the benefits of power-sharing should be recognised and credit given to measures likely to support this important goal, especially in research with vulnerable communities. Co-design is considered best practice, for example, in research involving indigenous peoples in New Zealand, Australia and Canada. (shrink)

This article discusses the paradox of exclusion/inclusion: U.S. health policy prohibits Latinos who fall under certain classifications from accessing health services and insurance yet permits them to be human subjects in health research. We aim to advance the discussion of health research ethics post the Tuskegee syphilis experiment in Latinos by (a) tracing the impacts of policy exclusion and the social context of anti-Latino sentiment on Latinos' low participation rates in health research and inequitable access to treatment modalities; (b) challenging (...) researchers to address social sources of vulnerabilities; and (c) offering recommendations on adapting a social justice ethical stance to address these challenges, which are part of the Tuskegee Study legacy. (shrink)