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ID: HR19-1347

Presenting author: Scott Neufeld

Presenting author biography:

Scott Neufeld is a PhD student in Social Psychology at Simon Fraser University in Burnaby, BC, Canada. Scott’s research focuses on interventions to reduce drug user stigma. Other research interests include social identity theory, collective resistance, NIMBYism, inclusive identities and the ethics of critical community-based participatory action research.

Research 101: Empowering community members in Vancouver’s Downtown Eastside to develop local guidelines for ethical research with people who use drugs

Scott Neufeld, Nicolas Crier, Samona Marsh, Lindsay Deane, Michael Schmitt

ISSUE:
People who use drugs (PWUD) are a heavily-researched population. In the context of the overdose crisis in North America, research that scrutinizes the lives of PWUD has only increased. This has amplified the ongoing concerns of many participants and community collaborators who feel that too often research benefits researchers disproportionately, and leaves communities feeling exploited, misrepresented, and exhausted. How can research with PWUD be conducted more ethically?

SETTING:
The Downtown Eastside (DTES) neighborhood (Vancouver, Canada) has been the site of multiple public health epidemics related to injection drug-use (most recently the opioid overdose crisis) as well as cutting-edge harm reduction interventions. This background has made the DTES one of the most heavily-researched communities in the world.

PROJECT:
In early 2018, with funding and support from Simon Fraser University and a local NGO, we developed a series of six weekly workshops called “Research 101”. These workshops brought together approximately 13 representatives from peer-based organizations (including PWUD) in the DTES to create space for community members themselves to discuss the pitfalls and potential of research in their neighborhood and empower them to develop local guidelines for ethical research in the DTES.

OUTCOME:
Research 101 workshop discussions were summarized in a co-authored “Manifesto for ethical research in the Downtown Eastside” that serves as a resource to both empower community organizations to develop more equitable partnerships with researchers and also help researchers ground their work in locally developed ethical principles of researcher transparency, community-based ethical review, empowering peer researchers in meaningful research roles, and taking seriously the need for reciprocity in the research exchange. Our ongoing work includes building consensus for these guidelines within the community and institutionalizing the principles of the manifesto in local universities’ procedures for ethical review of research in the DTES. Furthermore, our process could be replicated elsewhere.