Below the Radar Transcript
Episode 34: An Ethical Approach to Research — with Scott Neufeld and Nicolas Crier
Speakers: Paige Smith, Am Johal, Scott Neufeld, Nicolas Crier, Tiffany Muller Myrdahl
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Paige Smith 0:05
Hello, thanks for joining us on this episode of Below the Radar. I'm Paige Smith, and I'm with SFU's Vancity Office of Community Engagement. We would like to acknowledge that Below the Radar is recorded on the territories of Musqueam, Squamish, and Tsleil-Waututh peoples. On this episode, we talk to SFU Psychology PhD Student Scott Neufeld and facilitator, freelance writer, and outreach worker Nicolas Crier, about the work they do to promote ethical practices in Downtown Eastside and beyond. They are part of the team that authored "Research 101," a manifesto to ethical research in the Downtown Eastside. Along with our host Am Johal, Scott and Nick have a conversation about how this project came to be, the importance of conducting research ethically in all communities, and the profound impact it has had for the Downtown Eastside community and beyond.
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Am Johal 1:02
Delighted to be here with Nicolas Crier and Scott Neufeld. Maybe if we can just begin by introducing yourselves a little bit.
Scott Neufeld 1:08
Sure, my name is Scott Neufeld. I'm a PhD student up at Simon Fraser University, also a part of the BC Center on Substance Use. I'm doing a PhD in social psychology but I've had a really long time interest in community based research and especially research ethics in the context of community based research. So that was probably the genesis of my interest in research ethics and people's experiences of research in heavily researched community like the Downtown Eastside and that’s what led to some of the very early ideas around what became Research 101, and we'll talk more about that in a bit.
Nicolas Crier 1:46
Hello. My name is Nicolas Crier. I'm a long term Downtown Eastside resident. And I'm also involved with a number of projects, one of them being Research 101 workshop series, and also I'm a co-author on the manifesto for ethical research in the downtown Eastside with Scott. And I do a number of other kind of community based stuff.
Am Johal 2:07
Now, the manifesto and the empowering informed consent rights card were both launched at an event and I believe it was late January, but there was, you know, a couple of years of work that went into making that happen and a process. And, of course, it started out from issues that arise from both academic institutions and researchers doing work in neighborhoods, but also media and artists who are trying to do work. And oftentimes, the waiver forms are done from the perspective of the institution or the artists doing the work. And people in the community oftentimes are in a vulnerable spot in terms of having their rights represented. And so maybe if I could start with you, Nicolas, in terms of past experiences that you've had or what you thought were some of the issues at stake in trying to come up with an approach to ethics from a community perspective. What were the issues that you're running into related to university researchers, artists, other people trying to do work in the neighborhood here.
Nicolas Crier 3:11
I wasn’t myself really aware of it at first that it had gone on social along with researchers kind of inundating this community with their interests. I mean, there's a lot of reasons to want to research the Downtown Eastside, I guess, just not many people are aware of it down here. And when I when Scott sort of introduced me the whole concept and Sarah, talking about her experience with filmmakers doing a documentary, and they sort of didn't represent her the way she wanted, and stuck with it, like they went forward without her consent, this all this stuff sort of started dawning on me that yeah, that's that's important, right, that people would be asked permission and that you would respect a community when you came into it and like, you know, offered to take your shoes off when you go in someone's house. I think the analogy I've been using, and then Scott put together these workshops, my wife invited me to. We've had five weeks of really good discussions about the context of ethics in a research area, and how that affects people. And then I realized my wife does that all the time she does, she participates in research as a participant, so she does surveys, and, interviews and whatnot, where she's required to have a fairly trustworthy position in the community as appear, asking people really personal questions about their drug use and whatnot. These are things that require life experience to have to even be able to pull off. Nobody's going to answer to your drug questions if they don't know you, so I started to see the value in those in those positions. And we just realized that there's [no] statement of our own like a position of our own, from a community perspective, that would say that we realize that this is going on and that things are not being covered all the way and we just sort of want to cover our end on that perspective and make sure as Canadians to this, as just community members, as drug users, as marginalized citizens, as research participants and subjects were being respected in a dignified way. And I think that's what we've done so far.
Am Johal 5:19
Scott, from your perspective, as a PhD student, and someone who's done research, you've, of course dealt with ethics offices and that kind of thing. And you've had a productive conversation with at least the SFU one, but you were in supporting and working on this project had a set of questions that you had in terms of broadening what ethics might look like and wondering if you can share kind of your approach or how you entered into this conversation.
Scott Neufeld 5:46
Yeah, I think for me, during my Master's, I was doing a community based participatory research project out at a elementary school that became known as Vancouver’s Aboriginal focus school or PE Elementary. We were working really closely with the principal there, the first principal of the school. Her name was Bonnie Hutchinson, indigenous woman from Haida Gwaii. Through the course of that I was also reading a lot about research and thinking a lot about just the legacy of research and colonization, the ways that anthropological research or all kinds of health research has really harmed and misrepresented indigenous communities in particular, and I was really surprised at the kinds of questions that I had about my own ethics application at SFU on that round. I remember one of the key questions or revisions that they requested with something around changing the word compensation that participants would be compensated for their time and focus groups that instead needed to be remunerated because compensation is sort of a legal term and we didn’t want to give people the impression this was a legal compensation or something. It was a pretty small detail like that. I remember just thinking I feel like there's got to be bigger, more weighty questions about representation and sort of the ethics of process with a community based project like that. So that was maybe some of my initial foray into thinking, you know, what are the bigger issues around ethics when we're thinking about research? And how is it that there can be so much research that happens in impacted communities that all of which would be approved by an REB at a university and nevertheless, so many people have these experiences that they share of feeling disrespected by researchers or feeling left out of the process, feeling mistreated or misrepresented in some way. So there's sort of this contradiction there, in a sense that one set of ethics that's guiding in reviews by really well intentioned really thoughtful people up at REBs, nevertheless, not quite meeting the needs of some communities when it comes to thinking through research. And so in terms of like characterizing the problem within the Downtown Eastside, I think I probably came to that first through being connected with different activist circles and reading pieces by folks like Ivan Drury or folks from the Alliance Against Displacement, for example, that were talking about some of the research studies going on in the neighborhood and and how they felt these were really harmful. These were serving the interests, so gentrification or the criminalization of people with mental health issues in the neighborhood. And I was really curious as a researcher to see that research could be implicated in these harms, in these issues of social injustice. And so I was really interested in ways of intervening or learning more about that and what that experience was like, and ways of just elevating what what folks living through that had experienced for research, both positive and negative. Obviously, there's lots of really positive and thoughtful and respectful research that goes on. There's also a lot of research. I think one of the key things that I've heard from people when you talk about research in the DTES is people saying both: “we've been researched to death and what positive change has actually resulted” and also “we are the most heavily researched community in the world”. Both of those are just issues around frequency and volume, not even process. And I think as I started to do a lot of the initial consultation and work in the lead up to Research 101 just meeting with different organizations and telling them about this idea that we had around a bunch of workshops, talking about research ethics, lots of people had a real resonance with it and said: “we were always getting asked by researchers by various artists or people for the same thing, they want our stories, they want our experiences”. And people saying that they've had both good and bad experiences, but also that didn't always know exactly how to respond to those requests or how to evaluate them. And I think just the value of a conversation across different organizations became really apparent and that's where it became really useful connecting with Sarah Common from Hives for Humanity.
Am Johal 10:04
I was going to add, I think that there's so many issues that come up in these types of processes. I started first doing work in the neighborhood back in 98, with Humanities 101 and even doing a course that wasn't research particular has a lot of issues that go into trying to initiate new projects. And I know that through my work at SFU, there were concerns around grad students trying to do Master's work in the neighborhood. So I got pulled into that conversation related to developing an ethics process with people trying to initiate art projects. And so when I met you, Scott, you had taught in Community Journalism 101 at Megaphone and you'd approached me about possibly doing a piece of research and I was like, “Hey, who are you, man? Like, what's the research about? I'm not so sure, we're trying to do a different type of project and who's this guy trying to research”. I briefly met Nicolas because you're involved with Illicit with Kelty McKerracher. But your timing of bringing up these things and Sarah was really instrumental in coming forward with some concerns that she had with a project. But I would just say first of all, kudos to both of you and Sarah and everybody else who's involved in producing the card, because as somebody who goes in and teaches classes where people are very interested in doing community work, but don't necessarily have the background or experience. When I go into talk about ethics in classes now, I not only show the official SFU ethics piece, but I bring the empowering informed consent card, and I give them a copy of Research 101. So when we discuss ethics, there's the institutional part, which is only one part of ethics. But this is a whole other framing, they all kind of point to similar things, but I think the ones that are written from the community side pack a much more powerful punch, because they're giving very much a community narrative where oftentimes institutional approaches to ethics are really about risk management, not being sued all of these types of things. And oftentimes the bureaucratic language that applies to funding agencies, those kinds of things, don't translate on the ground. And I think those are some of the challenges. I think both of the documents speak in plain language to some really important things. And just wondering since you've launched it, I know that you were involved in a session during Congress of Social Sciences Humanities at UBC, back in the in the summer, but since it's been out there and out in the community, what if you heard back about the card? What kind of impact is it having impact?
Nicolas Crier 12:26
Impact. I'd like to get to an atomic bomb going off. Or what is the word viral? Yeah, it's been really fantastic. The response we've been getting from this is all over the place. I mean, it's online and we've traveled to Kelowna, Kamloops and we've delivered it to a room full of people. And Scott is an extremely talented writer. So you're right, the languages is made, basically for the people to understand. And you're right that there is a translation issue there and like a social translation issue too, where the academics might not have the confidence or whatever, to go forward and reach out and talk to the community members about the research or whatever. Because they don't understand, right? There's a class, the way class structures set up and stuff, there's lot of stigma and judgment that goes on. And they might just be scared to come down here and talk to a drug user or whatever. And this is sort of opened up a doorway to that, where you can present it to them. Like “what do you mean the community members who already have something written? an informed consent card? really?”. I can just see the look on their faces because I have seen the look on their faces. And it's really inspiring to see that. That sets a shift in our society that wasn't happening there, [and] I don't think would have happened unless we had taken these steps. Right. And I'm very fortunate. You're right. The timing was impeccable and feel very fortunate to have been a part of it.
Scott Neufeld 14:03
It's interesting what you said, I think that's another example of a stigma that researchers, whomever it is, coming into this neighborhood have a lot of expectations or assumptions and maybe those expectations around people's ability to articulate themselves, their needs, their expectations, and have a strong line of defense or really empowered way of engaging, I think that's maybe surprising to some people. So I'm glad this kind of headset off, from my perspective, in terms of some of the impact, I've seen I think there's sort of two branches of it and that correlates with the two kind of arenas that we've tried to mobilize our knowledge through this project. So at the one level within the Downtown Eastside community itself, the primary purpose of the project was spreading the fruits of this conversation that we had through these workshops: the manifesto, and also the empowering informed consent card. Spreading that around to different organizations. As we've spread the word and told people about the work that we've done and what we've drafted together, we've asked for people in organizations that really support it or see themselves as being really in alignment with it to signal that, what we call an endorsement, which is just a way of saying, “Yeah, as an organization, we're on board with this, we think this is a good idea. We agree with the principles”. Don't even necessarily have to agree with every single word of the manifesto, but to express that agreement, and that's helpful for us in terms of demonstrating that a lot of different organizations and folks in the neighborhood experience these issues in a similar way and hold this up as an important resource for empowering themselves. Abd some of the impact that we've seen there, I really appreciate when people say: “you know what, we get so many asks, and I don't always know how to respond. And now I can just pass this along. I just literally send the manifesto back to some researcher, whoever it is and say, here's some perspectives on what research is and what good practice looks like to us. Let us know how you plan on meeting these expectations. And sometimes they never hear back from them”. And people see that as a kind of good like filter. If somebody isn't willing to do the work to take the time to to engage in a good process, well, then they didn't want to work with them anyways. So that's one example of I think, a good impact. And then the other side is kind of reaching out more within the institutions, universities, research ethics boards, researchers, and also research trainees, graduate students. Back in the beginning of the year, Nick and I did our first guest lecture, we went out to UBC and talked about the manifesto at a UBC anthropology research methods graduate class. And they were really, really interested in the work. And I think that's sort of a key audience to be reaching. We've done the same thing with Simona who is another co-author and Jim. Both joined me for a graduate research methods lecture, actually one for graduate students, one for undergrads. The prof at SFU Harbor Center here, that was just a month ago. So that's one example. And then with REBs, that's been a really exciting part of this conversation. [We’ve had] a couple of meetings with representatives from SFU’s behavioral research ethics board, SFU’s officer research ethics, and also Providence Healthcare, which is the actual board that looks at most of the research coming from UBC in the Downtown Eastside. Having all those folks at the table has been really cool, just to see their support, the recognition that our REBs aren't necessarily set up to adjudicate research requests happening in the DTES at the level that would maybe anticipate or respond to all the concerns that community members have. So they've been really good participants in this process, and I think they really are interested in solutions to the problems that they've seen themselves and I don't think they've been well positioned or resourced to address them themselves. So I think this process is something that's kind of filled a gap in a sense.
Nicolas Crier 18:19
Fortunately, the Downtown Eastside has a long term history of initiating their own interventions regarding activism and community based action to stand up for themselves. Scott's wearing a hoodie that says: “Don't read us the book that we wrote”. Which is a quote by my wife from the manifesto and what she means is basically, that we know what we're doing, we're the experts in our own lives, we can we can handle this ourselves and [we want] the world to know that. Like in regards to harm reduction, and a number of other things, but in particular with research that given the opportunity, we would be able to handle this ourselves. So the next step beyond the printed Manifesto and getting the academics to read this, would be to have like a physical space for them to go and meet community members and discuss research and start building an archive of stuff of record. For the good of both sides, to have a central place that they know they can go to, and meet somebody that they know is there for the same reason, instead of just the researcher coming down and wandering around the alley or something looking for a research subject. “Are you interested in entering some personal questions?” And that's the next step. The next great thing that we're working on is trying to get a physical space up and running and working with the other REBs and I think they're quite impressed with the initiative that we're showing. I'm amazed with all the 15 co-authors on this thing.
Scott Neufeld 19:59
And for the moment, we're calling that the Community Research Ethics Workshop, just a signal that sort of thing that's in process, that we're trying to figure out and cut a small grant that we've got from us a fuse community engagement initiative that's been supporting some of that as well as different partner funds and resources. And it's been pretty cool just trying to explore what would that look like? And how could that develop in a meaningful way here, an actual place where community members could could be acting essentially, like an REB, like a Research Ethics Board and applying their own understanding of what is ethical, what is respectful in their own context of the Downtown Eastside based on their lived experience, and using that to usefully inform and evaluate research proposals at an early stage. So that's kind of what we're putting a lot of effort into right now.
Am Johal 20:48
Now in the Manifesto, and the Empowering Informed Consent Card came out of specific needs and issues that came from the community, but I can remember back in the late 90s, when Jim Green and Michael Ames used to teach an anthropology course and Humanities 101, students actually acted as the ethics board to approve research happening in the neighborhood. So this has been going on a long time, and people have tried to do different types of interventions over the years, but I think it's been some time before these types of cards have been able to be distributed. I know that they were done in the spirit of sharing them with other organizations, because other ones have different kind of policies in place, but they're meant to be adapted to the specific context of the local organization, but as they've been distributed, nationally, and even internationally that people have been probably be asking about how to adapt them to their local context and just wondering how are you hearing about them circulating to other places and are groups intending to adapt them outside of the Downtown Eastside as well?
Nicolas Crier 21:52
The most recent ones I've heard, involve the Canadian Association of People Who Use Drugs, want to do a review and see how it's translatable to their context and the UBC is working with myself. I work at Megaphone’s Speaker's Bureau and they do a storytelling workshop process that partnering with UBC Transformative Health and Justice Research to go into institutions with justice involved people, so into prisons, and I suggested something along these lines to them last week and they were really receptive to the idea of developing a resource that you could give to prisoners inside that would sort of prepare them, like teach them about stigma and teach them about storytelling and have them begin to process that stuff and learn about because people in prisons probably don't know that much about it. They're not really thinking about it that when they get out, they don't have much to go on right in the world is against them. So wouldn’t it be nice if they had something like this to read, that was contextualized towards them and maybe get out and be able to have a big room full people waiting for them, hear their personal story, because that's what we found really effective. Like even the research, the little research that's been done on stigma and colonization and stuff is that it's storytelling, when people are able to meet in person and hear their personal narrative about their experience, they're more likely to have an empathetic reaction to it, and therefore more likely to change their ideas about it. And that's, really exciting to me, on the big picture, that's huge. And so, yeah, we're working on that.
Scott Neufeld 23:34
I think it's a good, question of what is the relevance or the generalization of the work that we've done in this really specific context around what are this community's expectations around ethical, respectful research people from this community? How does that translate beyond the Downtown Eastside? and does it ? And so Nick and me and a couple of the other co-authors published an article in harm reduction journal in the summer that kind of describes a bit of the wider context of how we came to the development of the Research 101 Manifesto and just contextualize this process, describes what we did in a bit more detail than the manifesto does and at the end, it sort of concludes with, this is an internationally available journal, so we kind of, what is the relevance of thinking about this? And the thing that I'll continue to advocate is really, that there could be a Research 101 process in lots of other places, you could do the same thing that we've done here, which is do the work of getting to know some of the key players and organizations and individuals with the right experiences and expertise of research or whatever kind of engagement it is that's going on in a community, get them together and have a certain kind of conversation around people's experiences, positive, negative, most importantly, their expectations. Find a way of summarizing that and find a way of sharing that around, I think that can be a really culturally contextually specific process that can be replicated and that's ethic. People's expectations of what is respectful, what's appropriate are really tied to places and specific histories. There's a lot of studies that people are familiar with in this neighborhood that have been some of us had bad experiences and it's those specific experiences and histories that shape what people's expectations are and those might be different in another place and in another community.
Nicolas Crier 25:29
Today, actually, there's an article in the paper about how BC’s proposal to have the UN Declaration of Indigenous Rights adopted to the Canadian Constitution, and that ties in with research around indigenous people going back hundreds of years. Native people are not really that respected in the research and there are more research than anybody around here for hundreds of years. And that's important. Now, because the UN Declaration of Indigenous Rights was not actually accepted by Canada at first 12 years ago, when it came out, and now just happens to be that BC is fighting for the acceptance of those rights. The Truth and Reconciliation Commission came out that's enshrined in law now and, a lot of big major changes that are happening here for Indigenous People. So, just want to acknowledge the unseeded territories of the Coast Salish people Musqueam,Tsleil-Waututh and the Squamish that we're on and recognize that, from my perspective, both as a guest as an indigenous person, as a Downtown Eastsider, but also from the perspective of my co-authors from an academic institutional point of view, that we really understand that it's about disrespect of the territory, the space, that there was others here first doing the work first, and that their history is as much value here as anything. That we're not really thinking of anything new or anything just for presenting ideas that were already there and how like what Scott said about just doing the work of going out and meeting people and stuff and realizing that almost any community there's going to be passionate people that are that are in disadvantage. And that, there's gonna be people with means that can bring those means to the people. And however, you have to break it down, to show them that they're valued and that they can participate, really it does amazing things for the empowerment of those people. And which I've seen,my wife, her and I are not even high school graduates. But she gets published in academic journals, like the New England Journal of Medicine publishes her about safe consumption and stuff and these are these are amazing things to be a part of in this time, in day and age with Greta Thunberg and all that.
Am Johal 27:55
Nicolas, that you've got in your CV that you are published in a peer reviewed journal article, how did that go over with your friends and family that you're in the academic realm?
Nicolas Crier 28:06
Okay, I was adopted by academics actually, my grandmother it was a university professor for 30 years. And my uncle Josh has the highest academic average for a number of years. And yeah, they were blown away. They were just like, they knew I smart, I knew I had a talent for writing, but I couldn't explain the rules of writing for you. For me, it's a gift, that talent. I was sort of making use of it through illicit and another sort of community based projects, but that it takes a lot of my own initiative to like, stay on top of it. And like right now I'm doing three projects, a play and I work and, and it's all geared towards helping empowering this community. So just believe in it so much, and I realized that there's, so few of us around that kind of have the interest, the access and it's growing. I've gotten some major, really important contacts, that I feel if I don't do something with them in the moment, I might miss that opportunity. And, and now that opportunity is on behalf of a number of people, so there's like, an ethical review process, they were doing a show that came out and that, that if I don't do it, given the context of the job that they given me to do, I'd be laying down a whole bunch of people in this neighborhood, and they would be misrepresented. And and that would be my responsibility, right? So they don't even know that I'm doing this and they never will and they might never watch the show. And then right now you may be interested or even like me, but it's still my responsibility and I take it seriously and see how my family and friends are happy for me.
Am Johal 29:53
Scott. Nicolas, thank you so much for joining us on Below The Radar. And thank you so much for the wonderful work you do really look forward to seeing where the Conversation keeps going.
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Paige Smith 30:07
Thanks you again to Scott Neufeld and Nicolas Crier for joining us on this week's episode of Below the Radar. If you'd like to learn more about Research 101, we've provided a link to the digital copy of the manifesto, as well as a blog post that talks more about the project in the episode description. Next week, we'll speak to Tiffany Muller Myrdahl, a senior lecturer in SFU's department of Gender, Sexuality, and Women's Studies, in addition to the Urban Studies program.
Tiffany Muller Myrdahl 30:34
I often kind of joke about the fact that I'm a feminist geographer with people, because people don't really necessarily think of putting those two words together. So I usually explain that I'm interested in social change in the city, who has power in the city, and who's part of the planning process and who is left out of that. An easy place for people to imagine the culmination of feminism and geography is to think about safety in cities, and how cities are safe for some and less safe for others.
Paige Smith 31:06
Be sure to tune in next time for another episode of Below the Radar.
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