ror.org/010x8gc63
Résumés
Abstract
In February 2019, OUTSaskatoon, a 2SLGBTQ+ resource centre in Saskatoon, SK, received 1.1 M in federal funds to support a five-year project set to intervene in the instances and societal perpetuation of gender-based violence toward the 2SLGBTQ+ community. The project involved partnerships between OUTSaskatoon and the University of Saskatchewan, including a comprehensive research and evaluation stream to accompany the delivery of front-line services and educational activities. During the project’s application to the University’s Research Ethics Board (REB), members of the ethics review committee expressed heightened levels of fear and discomfort not only with the subject-matter, but with the role (and centrality) of the community organization within the research process. The documented experience explores pressing barriers to effective and ethical community-university research partnerships. To this end, the authors explore their communications with the REB alongside the themes of “vulnerability,” “risk-aversion,” and more broadly regarding the timelines of community work versus university processes. Together these themes maintain a culture of academic exceptionalism that causes significant barriers to the development of reciprocal partnerships between community partners and universities. In this case, the outcome was hopeful, as a formal complaint to the REB received a documented apology. In documenting this specific, though not unique, experience, we aim to highlight the possibilities for leaning in and building ethical space between and through community and academic environments to foreground both needed critique and collaborative pathways forward.
Keywords:
- Research Ethics Board,
- community-based research,
- non-profit organizations,
- ethics,
- risk,
- vulnerability
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Bibliography
- Banks, S., Armstrong, A., Carter, K., Graham, H., Hayward, P., Henry, A., Holland, T., Holmes, C., Lee, A., McNulty, A., Moore, N., Nayling, N., Stokoe, A., & Strachan, A. (2013). Everyday ethics in community-based participatory research. Contemporary Social Science, 8(3), 263–277.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Blackburn, S. (1999). Think: A compelling introduction to philosophy. Oxford University Press.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Burris, S., & Davis, C. (2009). Assessing social risks prior to commencement of a clinical trial: Due diligence or ethical inflation? The American Journal of Bioethics, 9(11), 48–54.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Butler, J. (2020). The force of nonviolence: An ethico-political bind. Verso Books.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- CIHR, NSERC, & SSHRC. (2019). Tri-Council policy statement: Ethical conduct for research involving humans – TCPS 2 2018. Government of Canada, Secretariat on Responsible Conduct of Research.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Collins, S. E., Clifasefi, S. L., Stanton, J., The Leap Advisory Board, Straits, K., Gil-Kashiwabara, E., Rodriguez Espinosa, P., Nicasio, A. V., Andrasik, M. P., Hawes, S. M., Miller, K. A., Nelson, L. A., Orfaly, V. E., Duran, B. M., & Wallerstein, N. (2018). Community-based participatory research (CBPR): Towards equitable involvement of community in psychology research. The American Psychologist, 73(7), 884–898. https://doi.org/10.1037/amp0000167Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Ermine, W. (2007). The ethical space of engagement. Indigenous Law Journal, 6(1), 193–203.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Fiske, S. T. (2009). Institutional review boards: From bane to benefit. Perspectives on Psychological Science, 4(1), 30–31.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Flicker, S., Savan, B., McGrath, M., Kolenda, B., & Mildenberger, M. (2007). “If you could change one thing...” What community-based researchers wish they could have done differently. Community Development Journal, 43(2), 239–253.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Griffith, D. M., Citrin, T., Jerome, N. W., Bayer, I., & Mebane, E. (2009). The origins and overview of the W. K. Kellogg Community Health Scholars Program. Progress in Community Health Partnerships: Research, Education, and Action, 3(4), 335-348.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Gustafson, D. L., & Brunger, F. (2014). Ethics, “vulnerability,” and feminist participatory action research with a disability community. Qualitative Health Research, 24(7), 997–1005.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Kwan, C., & Walsh, C. (2018). Ethical issues in conducting community-based participatory research: A narrative review of the literature. The Qualitative Report, 23(2), 369-386.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Loewen Walker, R. (2022). Queer and deleuzian temporalities: Toward a living present. Bloomsbury.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Miller, F. G., & Wertheimer, A. (2007). Facing up to paternalism in research ethics. Hastings Center Report. 37(3), 24–34.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Morse, J. M. (2007). Ethics in action: Ethical principles for doing qualitative health research. Qualitative Health Research, 17(8), 1003–1005.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Moyle, W. (2002). Unstructured interviews: Challenges when participants have a major depressive illness. Journal of Advanced Nursing, 39(3), 266–273.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Nadin, S., Katt, M., Dewa, C., & Cheng, C. (2018). NorthBEAT’s capacity-to-consent protocol for obtaining informed consent from youth evaluation participants: An alternative to parental consent. Canadian Journal of Program Evaluation, 33(1), 135-153.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Olsen, M. (2019, April 12). OUTSaskatoon receives $1.1 million for programs addressing genderbased violence. The Star Phoenix. https://thestarphoenix.com/news/local-news/outsaskatoonreceives-1-1-million-for-programs-addressing-gender-based-violenceGoogle Scholar Rechercher cette référence bibliographique sur Google Scholar
- OUTSaskatoon. (2019). Recommendations to the Standing Committee on Health: LGBTQ2 Health in Canada. Presented to the Standing Committee on Health. OUTSaskatoon: Saskatoon, SK. https://www.outsaskatoon.ca/researchGoogle Scholar Rechercher cette référence bibliographique sur Google Scholar
- Rossetto, K. R. (2014). Qualitative research interviews: Assessing the therapeutic value and challenges. Journal of Social and Personal Relationships, 31(4), 482–489.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Shaw, R. M. (2015). Ethics, moral life and the body: Sociological perspectives. Palgrave Macmillan UK.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Small, W., Maher, L., & Kerr, T. (2014). Institutional ethical review and ethnographic research involving injection drug users: A case study. Social Science & Medicine, 104, 157–162.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Snyder, J. E. (2011). Trend analysis of medical publications about LGBT persons: 1950–2007. Journal of Homosexuality, 58(2), 164–188.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Piller, T. (2019, April 12th). OUTSaskatoon getting over $1.1M to support survivors of gender-based violence. Global News. https://globalnews.ca/news/5162767/outsaskatoon-lgbtq2-survivorsgender-based-violence/Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Short, A. (2020, Mar 3rd). First-of-its-kind LGBTQ2+ youth home continues to have impact. Star Phoenix. https://thestarphoenix.com/news/local-news/first-of-its-kind-lgbtq2-youth-homecontinues-to-have-impactGoogle Scholar Rechercher cette référence bibliographique sur Google Scholar
- The First Nations Information Governance Centre. (2014). Ownership, Control, Access and Possession (OCAP): The Path to First Nations Information Governance (Paper). The First Nations Information Governance Centre.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Travers, R., Pyne, J., Bauer, G., Munro, L., Giambrone, B., Hammond, R., & Scanlon, K. (2013). “Community control” in CBPR: Challenges experienced and questions raised from the transPULSE project. Action Research, 11(4), 403–422.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- University of Saskatchewan. (2013). Human Research Ethics Policy University of Saskatchewan. https://policies.usask.ca/policies/research-and-scholarly-activities/human-research-ethics-policy.php#PrinciplesGoogle Scholar Rechercher cette référence bibliographique sur Google Scholar
- University of Saskatchewan. (2018). Discovery the world needs: University of Saskatchewan’s strategic research plan 2018-2025. University of Saskatchewan.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Van den Hoonaard, W. C. (Ed.) (2002). Walking the Tightrope: Ethical Issues for Qualitative Researchers. University of Toronto Press.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Wallerstein, N., Muhammad, M., Sanchez-Youngman, S., Rodriguez Espinosa, P., Avila, M., Baker, E. A., Barnett, S., Belone, L., Golub, M., Lucero, J., Mahdi, I., Noyes, E., Nguyen, T., Roubideaux, Y., Sigo, R., & Duran, B. (2019). Power dynamics in community-based participatory research: A multiple–case study analysis of partnering contexts, histories, and practices. Health Education & Behavior, 46(1_suppl), 19S-32S.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Wilson, J. (2011). Why it’s time to stop worrying about paternalism in health policy. Public Health Ethics, 4(3), 269–279.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Wittgenstein, L. (1965). I: A lecture on ethics. The Philosophical Review, 3–12.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Wiwchar, D. (2004). Nuu-chah-nulth blood returns to west coast. Ha-Shilth-Sa, 31(25), 1–4.Google Scholar Rechercher cette référence bibliographique sur Google Scholar
- Wood, L. (2017). The ethical implications of community-based research: A call to rethink current review board requirements. International Journal of Qualitative Methods, 16(1), 1-7.Google Scholar Rechercher cette référence bibliographique sur Google Scholar