'Ethical pickles': how Canadian HIV CBR researchers navigate ...

'Ethical pickles': how Canadian HIV CBR researchers navigate ...

"Ethical pickles": how Canadian HIV CBR researchers navigate tricky terrain Sarah Flicker, Adrian Guta, Cathy Worthington & Robb Travers Common complaints Misrepresented

No capacity built Overresearched Further marginalized

Coerced Misled CBR Collaborative, Equitable

Strengthsbased Social Change CBR Knowledge + Action Community

priority Background I was in an ethical pickle, (laugh) trying to figure out what were the ethical issues in doing this kind of work. - participant

Improving the Accessibility of Research Ethics Boards for Community-Based Research in Canada 1. Content Analysis 2. Key Informant Interviews 3. CBR Practitioner Interviews Method 50 in-depth semi-structured interviews with 55 participants engaged in HIV community based research:

institutional investigators, community investigators and project coordinators. CBR can be transformative What happened was so beautiful They were eating better! They were making some small sum of money every week They got a sense of value Skin improved! Hair improved! Crime decreased! You know the research

became something more than the research. Research Ethics Boards (REB) Acknowledging history Valuable & important opportunity to put pen to paper to reflect Sometimes helpful, thoughtful, creative and caring.

lack expertise & cultural competence Theyre so completely disconnected from the community and most members of the REB dont even have content expertise in the area. theres actually a lot of stigma and discrimination towards the community being studied and a great deal of ignorance about it. Ethics boards dont deal with ethical issues,

they deal with administrative issues. Dont ask, dont tell. Informed Consent? The Consent forms that you end up having to write and make people sign are more to protect the university from being sued than to protect the people being part of the study.

Recruitment So we just put up the poster, but no one ever came. Honoraria Id get like a $150 and no one would ask me whether Im going to use it on gambling or

getting drunk. Our research has shown, that when people dont have money, they will still use [drugs]. And they will usually engage in high risk income generating activities in order to do that. 20 bucks means one less blowjob. Honoraria & drug Use There is a reason why people call using heroin getting straight. When people are dope sick,

thats when they look the worst. And once they get a fix, then theyre usually fine and able to participate. Is it humane to let people, you know, sick it out through a project and suffer and pain, for four hours? You know? I dont know? RELATIONAL ETHICS

What does it mean to be a peer? People would ask me. Are you a lesbian? And I think, What! What the fuck! How dare you? I just resented the demand for me to identify myself as part of something. Well I wont say yes or no, I just wont answer. Conflict resolution [They] physically wanted to beat up the guy

that stole the computer. How do you account for that? When to intervene? Ive interviewed a kid who tells me that the only person they share needles with is their mother. its my mother, shes not going to hurt me. She would never hurt me. You are in really dangerous water there I mean I dont

want to damage that relationship, thats a really important relationship . Closure Once a project is over, peer researchers who have made real gains and then funding runs out and these guys were left high and dry and they were, some of them really took a step

backwards, like a BIG step backwards. Responsibility I felt responsible because if he hadnt had those three years, if he had been living his street life it wouldn't have taken him; he wouldnt have been as vulnerable as he was after three years of healthy living and then go back to nothing.

Acknowledgements PIs Sarah Flicker, York University Robb Travers, Wilfrid Laurier Co-Is Adrian Guta, University of Toronto Catherine Worthington, University of Victoria

Claudia Mitchell, McGill University Jacquie Gahagan, Dalhousie University Louise Binder, Canadian Treatment Action Council Michael Wilson, McMaster University, Patricia OCampo, St. Michaels Hospital Sarah Fielden, University of British Columbia Stephanie Nixon, University of Toronto Thanks to all our participants who bravely shared their stories.

Funding was provided by

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