photos: Roundtable meeting of the members of Research 101: A Manifesto For Ethical Research in the Downtown Eastside, who are now lobbying for a permanent Community Research Ethics Workshop. Photo submitted.

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What is the Community Research Ethics Workshop?

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By Nicolas Crier

 

When I moved here in 2007, I was unaware of the sheer volume of research that goes on in the 10-square-block radius once referred to as “the poorest postal code in North America.”

Between 2010-2018, more than 445 peer-reviewed articles, dissertations and research reports were published about this tiny — but mighty — neighbourhood. That's a hell of lot of poking and prodding!

I had no clue about the scope of data crunched, personal narratives tapped, or hours spent analyzing all that knowledge in an unrelenting onslaught of academic interest in this community, not to mention how all this interest affected those involved.

But then in 2017 I met Scott Neufeld and my small world was opened up.

Neufeld, who was working on a PhD in social psychology at SFU, invited me and more than a dozen others to participate in  a series of workshops that would explore research and ethics in the DTES. Over six weeks we learned that not only does a lot of research take place in the DTES, but that much of it causes harm.

Furthermore, rarely does this extractive research — primarily undertaken by bright-eyed academic students and a plethora of commercial interests — result in acknowledging, let alone repairing, any of those harms.

This can cause pain and suffering for the residents being researched, including physical and emotional exhaustion, substance misuse or relapse, psychological re-traumatization and shame, to name a few. Plus, the DTES members who are answering personal questions about their lived experiences  receive little or nothing in return. Time and again, all the thanks good “research assistants” are shown for their efforts is, at best, a $10 gift card from Tim Hortons.

And what actually happens to all the data that is touted as a call for change? It goes behind a paywall at a university where the public — including those who contributed — must pay to read it.

And still, nothing actually changes.

The groundbreaking result of the workshops — Research 101: A Manifesto For Ethical Research in the Downtown Eastside — was a positive departure from the normalized view of this “impoverished” community. With more than 15 DTES co-authors and over 30 organizational endorsements, Research 101 galvanized the academic world and the DTES in a way never seen before. (Read the full report at: http://bit.ly/R101Manifesto).

Research 101 was a true collaboration, possible only with generous funding from SFU's Vancity Office of Community Engagement and Hives for Humanity, and efforts have continued to be supported by the UBC Learning Exchange.

Because of this successful group effort, an idea was born: why doesn't the DTES have its own permanent research ethics board? Why can’t we have a meaningful say as to what research takes place in our own backyard?  

So, a few core participants of Research 101 decided to work with Neufeld and several others to look for a way to make it happen — and the Community Research Ethics Workshop (a.k.a. the CREW) was born.

CREW envisions a “hub” that would facilitate respectful interactions between researchers and those participating in research, with the participants acting as subjects, assistants, data collectors and in other capacities.

It would be organized by community members themselves to ensure that research is conducted in a way that is honourable and fair; that people are properly compensated for their time and knowledge; that this knowledge only be shared upon obtaining informed consent (which includes being made aware of the possible implications of the research); and that the people affected by this research are given the option of having a seat at the table where decisions regarding this research are being made.

After all, if you’re going to go root around in someone’s home and start asking a bunch of intrusive questions about their personal existence, don’t you think you should at least take your shoes off first?

It's moving slowly, as the wheels of bureaucracy tend to do, but we have done a few “practice” reviews of research from universities — PhD projects which involved direct interaction with community members and the divulging of sensitive personal information that might lead to dramatic policy change in systems of care down the road.

The reaction we received from those who offered to have their projects “CREW reviewed” was so overwhelmingly positive and inspiring that a documentary film is now being made about it. In addition, the Research 101 workshop model is being replicated in multiple cities across Canada — and even in other countries.

So if you ask me what the difference is between “us” and “them,” I'll say if you do your research, there is no “us and them.” There is only us. One world, one community.

Stay tuned for more on the CREW. 

This column is managed by Nicolas Crier. If you'd like your query answered by a Megaphone expert, send it to: [email protected] megaphonemagazine.com

 

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