Drug user networks and community-based organizations have underlined the importance of meaningful involvement of people who use drugs (PWUD) in research about their lives. Alongside an increase in community-based research (CBR) in HIV/AIDS are dialogues concerning the ethical challenges with this form of research, which have led to the development of guidelines on ethical conduct of CBR. However, such guidelines do not focus specifically on ethics in CBR with PWUD. Therefore, we carried out a scoping review to identify best practices and challenges when conducting CBR with PWUD. Scoping review results and pan-Canadian community consultations informed the development of this tool for community members.
Thank you to the drug user organizations and activists who participated in consultations on the community resource. Funding and support for this project provided by CIHR – Social Research Centre in HIV Prevention. The authors are grateful for early support for this project provided by Universities Without Walls.
Graphic Design by The Public Studio.
Web design by Pam Sloan Designs.
Dr. Peggy Millson (SRC Grant PI) is a Professor Emeritus in the Dalla Lana School of Public Health at the University of Toronto, and is a physician with a specialty in Public Health and Preventive Medicine. She has been researching HIV, addiction, and harm reduction in various ways since 1990. She has extensive experience in community-based research with people who use drugs and community service providers who work with them.
Dr. Catherine (Cathy) Worthington is a Professor in the School of Public Health and Social Policy, University of Victoria. She has a background in health services research, social work, and public health, and conducts research on community health and social services, particularly for underserved populations. Her current work within the HIV field focuses on housing, employment, training and mentoring, and community-engaged research methods.
Dario Kuzmanović (Project Lead) is a research ethicist and a member of Joint Centre for Bioethics at University of Toronto. His academic focus is on research ethics, privacy and confidentiality, as well as HIV/AIDS research. Since 2008, he has worked closely with a unique HIV community-based research ethics board. As a research ethicist, Dario has consulted for numerous private companies and international groups, including the World Health Organization.
Mikiki is a performance and video artist from Newfoundland. They have been working in sexual and reproductive health education, HIV and harm reduction for over twenty years. Mikiki has done this work as a volunteer, as a program coordinator, and a board member with local, regional and national organizations throughout Canada in St. John's, Calgary, Saskatoon, Ottawa, Montreal and Toronto. Mikiki currently works for a community health centre coordinating a harm reduction peer street outreach program.
Zack Marshall is a community based researcher, social worker, and PhD candidate in the Division of Community Health and Humanities at Memorial University. Supported by a CIHR Fellowship, Zack’s current work highlights the ethics of research with marginalized communities including trans individuals and communities, people who use drugs, and young people.
Ayden Scheim is a PhD candidate, Trudeau Foundation Scholar, and Vanier Canada Graduate Scholar in epidemiology and biostatistics at Western University. His research focuses on social determinants of health and access to health care among sexual and gender minorities, and people who use drugs. He has been a front-line health promoter for over a decade, and is active with local harm reduction and drug user activist initiatives.
Rusty Souleymanov is a PhD student at the Factor Inwentash Faculty of Social Work, University of Toronto. His work focuses on the health and well-being of substance-using gay and bisexual men in Ontario, and is supported by the Social Sciences and Humanities Research Council of Canada.
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Site design: Pam Sloan Designs