Research 101: A process for developing local guidelines for ethical research in heavily researched communities

Abstract

Background Marginalized communities often attract more than their share of research. Too often, this research benefits researchers disproportionately and leaves such communities feeling exploited, misrepresented, and exhausted. The Downtown Eastside (DTES) neighborhood of Vancouver, Canada, has been the site of multiple public health epidemics related to injection drug use as well as the site of much community-led resistance and struggle that has led to the development of cutting-edge harm reduction interventions (e.g., North America’s first supervised injection facility, Insite) and a strong sense of community organization. This background has made the DTES one of the most heavily researched communities in the world. Amidst ongoing experiences of unethical or disrespectful research engagement in the neighborhood, a collaboration between local academic researchers and community representatives developed to explore how we could work together to encourage more respectful, community-responsive research and discourage exploitative or disrespectful research. Methods We developed a series of six weekly workshops called “Research 101.” These workshops brought together approximately 13 representatives from peer-based organizations in the DTES with a variety of experiences with research. Research 101 created space for community members themselves to discuss the pitfalls and potential of research in their neighborhood and to express community expectations for more ethical and respectful research. Results We summarized workshop discussions in a co-authored “Manifesto for Ethical Research in the Downtown Eastside.” This document serves as a resource to empower community organizations to develop more equitable partnerships with researchers and help researchers ground their work in the principles of locally developed “community ethics.” Manifesto guidelines include increased researcher transparency, community-based ethical review of projects, empowering peer researchers in meaningful roles within a research project, and taking seriously the need for reciprocity in the research exchange. Conclusions Research 101 was a process for eliciting and presenting a local vision of “community ethics” in a heavily researched neighborhood to guide researchers and empower community organizations. Our ongoing work involves building consensus for these guidelines within the community and communicating these expectations to researchers and ethics offices at local universities. We also describe how our Research 101 process could be replicated in other heavily researched communities. Electronic supplementary material The online version of this article (10.1186/s12954-019-0315-5) contains supplementary material, which is available to authorized users.

Toward intersubjective ethics in community-based research

“…Our argument echoes recent intellectual discussions around ethical research practice (see for example Dalton, 2018;Neufeld et al, 2019;Tomaselli, 2016). Regardless of academic debates and arguments, we and others are still bound by indivisible and slow-moving structures -boards, committees, faculties -that frame our ethical practice on one hand and determine our research outcomes on the other.…”

“…In a sense, shared ethics is one of the research questions of a new CBR project. Just like a regular research question, a process can be put in place to guide the elicitation of knowledge and actions to nurture it through the course of research (see Neufeld et al, 2019 for a discussion on similar concerns and a proposed practical process to elicit local views of community ethics, drawing on work with a heavily researched Canadian community).…”

“…The focus here is on the micro social relations between different people and the creation of knowledge through those relations. This can take the form of a kind of narrative ethics, whereby community voices are elevated with the aim of developing collective narratives between researchers and community partners (Neufeld et al, 2019;Stevenson, 2016). Such an ethics would situate researchers and communities in a "system of relationality not only with one another but also with themselves" (Stevenson, 2016, p. 373).…”

The generative potential of mess in community-based participatory research with young people who use(d) drugs in Vancouver

“…Similarly, substance use researchers have troubled the assumption that CBPR is an inherently more ethical form of research, demonstrating how CBPR can stigmatize, exploit, and over-burden people who use(d) drugs [ 15 , 18 , 23 , 55 , 57 ]. Drug user activists in Vancouver have called out ‘tokenism’ in some participatory projects, referring to projects that involve people who use(d) drugs superficially but deny them meaningful control or influence [ 45 , 65 ]. Scholars have raised similar concerns about tokenism within youth-focused CBPR projects [ 3 , 8 ].…”

Reading between the bars: exploring the representation of young adults with incarcerated parents in text literature

“…A plethora of research exists, but little legitimate change occurs because the funding from the research often allows these programs to run. Once studies have ceased, their perhaps beneficial supports disappear, and researchers have given the perception that they are making progressive change, while over-researched participants get forgotten (Neufeld et al, 2019).…”