Scott Neufeld, PhD student in social psychology, has collaborated with 15 other contributors to develop a manifesto for promoting ethical research in the Downtown Eastside. Photo credit: Jamie-Leigh Gonzales/Melissa Roach

Community

Report addressing research ethics seeks to improve researcher-participant relationships in DTES

April 23, 2019
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A new report that addresses ethical concerns when conducting research with marginalized populations in Vancouver’s Downtown Eastside (DTES) could help to alleviate researcher-participant tensions in the heavily researched neighbourhood.

DTES residents’ growing aversion to research has caused some community members to adopt a strict “just say no” policy when it comes to research requests—of which there are many. Some residents attest to receiving multiple requests per week from researchers.

SFU PhD student Scott Neufeld developed the 17-page report, “Research 101: A Manifesto for Ethical Research in the Downtown Eastside,” with 15 other contributors, many of them DTES research participants. The report’s findings and recommendations derived from a six-week series of workshops held in spring 2018. The workshops were sponsored by SFU’s Vancity Office of Community Engagement and DTES non-profit Hives for Humanity.

Scott Neufeld meets with DTES community members who contributed to Research 101. Photo credit: Sarah Common

Mutual respect, reciprocity and access to completed research are just some of the many ethical concerns raised in the report. It also acknowledges that research has often been at the expense of DTES participants rather than for their benefit.

“It really bothers me that research, and researchers, have a bad name,” says Neufeld, who is studying social psychology at SFU. “We’re associated with the exploitation of marginalized communities and seen as disconnected from the struggles of people who are dealing with layers of stigma and oppression on a daily basis.”

Jule Chapman, a member of the DTES and contributor to the report, explains that most residents have an avoidant and skeptical reaction to researchers.

“One time, researchers asked residents to do an hour-and-a-half-long survey that was really complicated and confusing,” says Chapman. “People were getting dope-sick during the survey—that is, they needed to use drugs again to stop withdrawal symptoms.”

Scott Neufeld with a collaborator, Nicolas Crier. Photo credit: Nathan Crompton

These experiences are not uncommon in a neighbourhood that has been heavily researched over the past few decades. Many DTES community members are aware that the area has been studied significantly, but the high levels of poverty, substance use, disease, and housing issues have remained unchanged.

Neufeld found it surprising to hear just how committed some members of the DTES had been to the research in which they had participated, convinced that their work was going to lead to tangible positive changes in their community in timely fashion.

Samona Marsh, another DTES resident and contributor to the report, adds that sometimes community members will participate in the research for the monetary rewards, but they might often do it in a dishonest or inaccurate way.

This lack of accuracy could potentially be something that the report helps to address. “I think more ethical and respectful research tends to be more valid and useful research, and that’s good for all researchers, and good for communities too,” says Neufeld.

Neufeld and his contributors hope their work on the report will be the beginning of positive change between researchers and participants. The report has already initiated conversations around developing a community research ethics board to complement the University Research Ethics Board’s reviews of ethics applications pertaining to the DTES.

“I’m incredibly proud of the work we’ve been able to accomplish,” says Neufeld. “Research 101 would not have been possible without the incredible group of DTES community members who came out to share from their rich experiences and wisdom.”

“What’s been surprising to me is how quickly the report has blossomed in the community,” says Marsh. “It’s kind of cool when people ask me if I’ve heard of the report, and I can say, ‘Actually, I helped to write it!’”

Chapman says, “I hope it empowers participants in research and gets researchers more involved in community at the grassroots level in the DTES and beyond."