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" Ethical pickles ": how C anadian HIV CBR researchers navigate tricky terrain 

" Ethical pickles ": how C anadian HIV CBR researchers navigate tricky terrain . Sarah Flicker, Adrian Guta , Cathy Worthington & Robb Travers. Common complaints. Misrepresented. No capacity built. Over-researched. Misled. Further marginalized. Coerced. CBR. Background.

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" Ethical pickles ": how C anadian HIV CBR researchers navigate tricky terrain 

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

  2. Common complaints Misrepresented No capacity built Over-researched Misled Further marginalized Coerced

  3. CBR

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

  5. “Improving the Accessibility of Research Ethics Boards for Community-Based Research in Canada” • Content Analysis • Key Informant Interviews • 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.

  6. 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.”

  7. Research Ethics Boards (REB) • Acknowledging history • Valuable & important opportunity to put pen to paper to reflect • Sometimes helpful, thoughtful, creative and caring.

  8. lack expertise & cultural competence “They’re so completely disconnected from the community and most members of the REB don’t even have content expertise in the area. … there’s actually a lot of stigma and discrimination towards the community being studied and a great deal of ignorance about it.”

  9. “Ethics boards don’t deal with ethical issues, they deal with administrative issues.” “Don’t ask, don’t tell.”

  10. 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.”

  11. Recruitment “So we just put up the poster, but no one ever came.”

  12. Honoraria “I’d get like a $150 and no one would ask me whether I’m going to use it on gambling or getting drunk…. Our research has shown, that when people don’t 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.”

  13. Honoraria & drug Use “There is a reason why people call using heroin ‘getting straight.’ When people are dope sick, that’s when they look the worst. And once they get a fix, then they’re 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 don’t know?”

  14. Relational Ethics

  15. 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 won’t say yes or no, I just won’t answer.”

  16. Conflict resolution [They] “physically wanted to beat up the guy that stole the computer. How do you account for that?”

  17. When to intervene? “I’ve interviewed a kid who tells me that the only person they share needles with is their mother. … ‘its my mother, she’s not going to hurt me. She would never hurt me.’ You are in really dangerous water there… I mean I don’t want to damage that relationship, that’s a really important relationship ….”

  18. 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.”

  19. Responsibility “I felt responsible because if he hadn’t had those three years, if he had been living his street life … it wouldn't have taken him; he wouldn’t have been as vulnerable as he was after three years of healthy living and … then go back to nothing.”

  20. 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 O’Campo, 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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