Abstract
Urban communities experiencing marginalization often disproportionately bear the risks and burdens of research and are left out of research ethics governance processes. To address this, many communities have created place-based and community-led research ethics governance initiatives to ensure that community voice is included in discussions surrounding research conduct. Place-based strategies in the Vancouver Downtown Eastside, the Bronx, and the Philadelphia Promise Zone successfully mobilize community perspectives in research ethics, filling in a significant gap in our current system of institutional research ethics review and oversight. These cases demonstrate that place-based research ethics governance has the potential to account for the community-level risks posed by research projects and to ensure communities receive more felt benefits. Place-based communities sidestep simplistic notions of identity based on single shared features and make space for intersectional analyses and diverse community viewpoints to be considered. Such communities have a unique claim to expertise given their shared experience of place, which grants them the ability to see problematic assumptions embedded in scientific projects as well as community-level concerns within research. Despite this, many marginalized communities are excluded from current research ethics oversight processes. This exclusion demands critical examination and a way forward to facilitate the integration of place-based community oversight strategies within research ethics governance.
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Notes
- 1.
Also known as (Tribal) Institutional Review Boards (IRBs), Community Research Review Committees (CRRC) Ethics Committees (ECs), and Research Ethics Committees (RECs), and Research Advisory Councils (RACs). In this chapter, for institutional review entities, we will be using the terms IRBs and REBs interchangeably; IRBs refer to the US context and REBs refer to the Canadian context.
- 2.
To apply OCAP in research with Inuit communities of Canada, some Inuit tribal councils have suggested adapting the OCAP principles to the Inuit Qaujimajatuqangit, the traditional laws that guide living and knowing for the Inuit (Mashford-Pringle & Pavagadhi, 2020).
- 3.
Guishard et al. (2021) in “What We Not Finna Do: Respectfully Collaborating with Skinfolk and Kinfolk in Black Participatory Action Research” further describes the geographical and historical context of research in the Bronx, and the upcoming, community-led Community Engaged Research Academy (CERA) project, aimed at addressing harmful research and developing research capacity in the community. CERA is described as a strategy that is not only focused on teaching research methods for its own sake but on “redress[ing] research and schooling as sites of trauma and humiliation for BIPOC (Black, Indigenous, and People of Color) persons by nurturing the capacity of participants to develop research projects without researchers” (4).
- 4.
Federal Wide Assurance (FWA) is “an assurance of [the institution’s] compliance with the U.S. federal regulations for the protection of human subjects in research” (US Department of Health & Human Services, 2017). FWA is the main mechanism for compliance oversight by the Office for Human Research Protections in the US. An IRB must have FWA in order to be eligible for support from the Department of Health & Human Services.
- 5.
Initially a residential area for loggers and fishermen working in Vancouver’s natural resource economy, the DTES offered workers single-occupancy hotel rooms and services such as bars. From the 1950s to the 1960s, urban and commercial development surrounding the DTES eventually drove out public transportation, public services, and investors from this area, attracting low-income people seeking affordable housing (Newham, 2005). By the 1970s, the DTES was a refuge for de-institutionalized psychiatric patients and those who suffered through the Canadian residential school system, the 60s scoop, the foster care system, and the national war on drugs and war on the poor (Masuda et al., 2020). It is in this historical context that the DTES community continually resists the dispossession stemming from market-dependent “revitalization” policies aimed to develop the DTES for real estate investment, which inevitably leave many residents to forcibly disperse, or ultimately, be re-institutionalized through the psychiatric or carceral system (Schatz, 2010).
- 6.
Although the reasons for the inclusion of community members on REBs is not always well understood or articulated; see (Solomon-Cargill, 2016) for a detailed examination of this concern in the US context.
- 7.
- 8.
A paper by Msoroka and Amundsen (2018) presents two case studies of community-based, emancipatory research projects, one in a Tanzanian prison, and the other with Maori communities in New Zealand. Both of these case studies showcase researchers and communities attuning universal ethical principles to the cultural context in which the ethical deliberation is taking place. The authors conclude that this hybrid approach “preserves the tension and insights of both universalism and relativism to proactively empower emancipatory research” (14).
References
Aboriginal Health Research Review Committee & Manitoulin First Nations. (2003). Guidelines for Ethical Aboriginal Research: A resource manual for the development of ethical and culturally appropriate community-based research within the First Nations communities in the Manitoulin area. Noojmowin Teg Health Centre. Retrieved from: https://www.noojmowin-teg.ca/programs-services/manitoulin-anishinabek-research-review-committee
Albert Einstein College of Medicine. (2012). Community IRBs and research review boards: Shaping the future of community-engaged research. The Bronx Health Link and Community-Campus Partnerships for Health. Retrieved from: https://ccphealth.org/community-irbs-research-review-boards-shaping-the-future-of-community-engaged-research/
Anderson, E. E. (2006). A qualitative study of non-affiliated, non-scientist institutional review board members. Accountability in Research, 13, 135–155.
Australian Institute of Aboriginal and Torres Strait Islander Studies. (2020). AIATSIS code of ethics for Aboriginal and Torres Strait Islander research. Retrieved from: https://aiatsis.gov.au/sites/default/files/2020-10/aiatsis-code-ethics.pdf
Bauer, G., Devor, A., Heinz, M., Marshall, Z., Sansfaçon, A. P., & Pyne, J. (2019). CPATH ethical guidelines for research involving transgender people & communities. Canadian Professional Association for Transgender Health. Retrieved from: http://cpath.ca/en/resources/
Blumenthal, D. S. (2006). A community coalition board creates a set of values for community-based research. Preventing Chronic Disease, 3(1), A16. PMID: 16356369.
Boilevin, L., Chapman, J., Deane, L., Doerksen, C., Fresz, G., Joe, D. J., Leech-Crier, N., Marsh, S., McLeod, J., Neufeld, S., Pham, S., Shaver, L., Smith, P., Steward, M., Wilson, D., & Winter, P. (2019). Research 101: A manifesto for ethical research in the downtown eastside. University of British Columbia Open Collections. Retrieved from: http://hdl.handle.net/2429/69264
Brunger, F., & Bull, J. (2011). Whose agenda is it? Regulating health research ethics in Labrador. Études Inuit Studies, 35(1–2), 127–142.
Bull, J. (2016). In W. C. Van den Hoonaard & A. Hamilton (Eds.), The ethics rupture: Exploring alternatives to formal research ethics review (pp. 167–186). University of Toronto Press.
Bull, J., & Hudson, A. (2019). Research governance in NunatuKavut: Engagement, expectations and evolution. International Journal of Circumpolar Health, 78(2), 1556558. https://doi.org/10.1080/22423982.2018.1556558
Bull, J., Beazley, K., Shea, J., MacQuarrie, C., Hudson, A., Shaw, K., et al. (2019). Shifting practise: Recognizing indigenous rights holders in research ethics review. Qualitative Research in Organizations and Management: An International Journal, 15(1), 21–35.
Campbell, T. D. (2014). A clash of paradigms? Western and indigenous views on health research involving aboriginal peoples. Nurse Researcher, 21(6), 39–43.
Carroll-Scott, A. (2020). Importance of a place-based and community-moderated system of research oversight to maximize benefits for social change. Social Innovations Journal, 2(2), 1–18.
Carroll-Scott, A., Kolker, J., Confair, A., Moore, K., Melly, S., & Joshi, R. (2017). Community health profile: West Philadelphia Promise Zone. Urban Health Collaborative Community Brief. Dornsife School of Public Health, Drexel University. Retrieved from: https://drexel.edu/uhc/resources/briefs/West-Philadelphia-Promise-Zone/
Casado, J. (2013). Ethical engagement of communities, institutions, and providers in research: Lessons from the community. Progress in Community Health Partnerships: Research, Education, and Action, 7(3), 353–355.
Cheah, P. Y., Lwin, K. M., Phaiphun, L., Maelankiri, L., Parker, M., Day, N. P., et al. (2010). Community engagement on the Thai-Burmese border: Rationale, experience and lessons learnt. International Health, 2(2), 123–129.
Cherokee Nation. Helicopter research. Retrieved from: https://irb.cherokee.org/media/rkknqeww/helicopter-research.pdf
Collins, P. H. (1990). Black feminist thought in the matrix of domination. In Black feminist thought: Knowledge, consciousness, and the politics of empowerment (pp. 221–238). Unwin Hyman.
Coulthard, G. S. (2014). Introduction: Subjects of empire. In G. S. Coulthard (Ed.), Red skin white masks: Rejecting the colonial politics of recognition (pp. 1–24). University of Minnesota Press.
Crenshaw, K. (1991). Mapping the margins: Intersectionality, identity politics, and violence against women of color. Stanford Law Review, 43(6), 1241–1299.
Dangerfield, K. (2018, May 11). Canada subjected indigenous people to ‘cruel’ medical experiments, lawsuit claims. Global News Canada. Retrieved from: https://globalnews.ca/news/4202373/indigenous-people-medical-experiments-canada-class-action-lawsuit/
Damon, W., Callon, C., Wiebe, L., Small, W., Kerr, T., & McNeil, R. (2017). Community-based participatory research in a heavily researched inner-city neighbourhood: Perspectives of people who use drugs on their experiences as peer researchers. Social Science & Medicine, 176, 85–92.
Flicker, S., Travers, R., Guta, A., McDonald, S., & Meagher, A. (2007). Ethical dilemmas in community-based participatory research: Recommendations for institutional review boards. Journal of Urban Health, 84(4), 478–493.
Freire, P. (2000). Pedagogy of the oppressed (30th anniversary ed.). Continuum.
Friesen, P., Kearns, L., Redman, B. K., & Caplan, L. C. (2017). Extending ethical strides: From tribal IRBs to the Bronx community research review board. The American Journal of Bioethics, 17(11), W5–W8.
Friesen, P., Doerksen, E., & Gunay, A. (2021). Solidarity without sovereignty: Extending the Belmont principles further? The American Journal of Bioethics, 21(10), 25–27.
Galea, S., Factor, S., Bonner, S., Freudenberg, N., Latka, M., Palermo, A., & Vlahov, D. (2001). Collaboration among community members, local health service providers, and researchers in an urban research center in Harlem, New York. Public Health Reports, 116, 530–539.
Guishard, M. A., Heyward, D. A., Brown, J. T., & Stoddard-Pennant, M. (2021). What we not finna do: Respectfully collaborating with skinfolk and kinfolk in black participatory action research. Global Journal of Community Psychology Practice, 12(2), 1–35.
Guta, A., Wilson, M. G., Flicker, S., Travers, R., Mason, C., Wenyeve, G., & O’Campo, P. (2010). Are we asking the right questions? A review of Canadian REB practices in relation to community-based participatory research. Journal of Empirical Research on Human Research Ethics, 5(2), 35–46.
Harding, S. (1995). “Strong objectivity”: A response to the new objectivity question. Synthese, 104(3), 331–349.
Hayward, A., Sjoblom, E., Sinclair, S., & Cidro, J. (2021). A new era of indigenous research: Community-based indigenous research ethics protocols in Canada. Journal of Empirical Research on Human Research Ethics, 16(4), 403–417. https://doi.org/10.1177/15562646211023705
Heyes, C. (2002). Identity politics. In E. N. Zalta (Ed.), The Stanford encyclopedia of philosophy (Fall 2020 ed.). Retrieved from: https://plato.stanford.edu/archives/fall2020/entries/identity-politics
Hsieh, J., Chang, E. Y. T., & Lakaw, S. (2019). From collective consent to consultation platform: An experience of indigenous research ethics in Makota’ay. Junctures, 2019(20), 71–86.
Hudson, M., Milne, M., Reynolds, P., Russell, K., & Smith, B. (2010) Te Ara Tika. Guidelines for Māori research ethics: A framework for researchers and ethics committee members. Retrieved from: https://www.hrc.govt.nz/resources/te-ara-tika-guidelines-maori-research-ethics
Intemann, K. (2010). 25 years of feminist empiricism and standpoint theory: Where are we now? Hypatia, 25(4), 778–796.
Johnson, T. J. (2010). Place-based learning and knowing: Critical pedagogies grounded in indigeneity. GeoJournal, 77, 829–836.
Johnson, J. C., Hayden, U. T., Thomas, N., Groce-Martin, J., Henry, T., Guerra, T., Walker, A., West, W., Barnett, M., & Kumanyika, S. (2009). Building community participatory research coalitions from the ground up: The Philadelphia area research community coalition. Progress in Community Health Partnerships, 3(1), 61–72.
Jürgens, R. (2005). “Nothing about us without us” – Greater, meaningful involvement of people who use illegal drugs: A public health, ethical, and human rights imperative. Canadian HIV/AIDS Legal Network.
Kahnawake Schools Diabetes Prevention Project. (2007). Code of research ethics. Retrieved from: http://qimnp.com/wp-content/uploads/2018/04/Appendix-A-ksdpp_code_of_research_ethics2007.pdf
Kaplan, S. A., Calman, N. S., Golub, M., Davis, J. H., Ruddock, C., & Billings, J. (2006). Racial and ethnic disparities in health: A view from the South Bronx. Journal of Health Care for the Poor and Underserved, 17(1), 116–127.
Klitzman, R. (2012). Institutional review board community members: Who are they, what do they do, and whom do they represent? Academic Medicine: Journal of the Association of American Medical Colleges, 87(7), 975.
Ktunaxa/Kinbasket Tribal Council. (1998). Ktunaxa Nation’s code of ethics for research. Indigenous Child Well-being Research Network. Retrieved from: https://icwrn.uvic.ca/ethics/
Lawrence, C., & Stewart, K. (2016). The challenge of community representation: Lessons from six HIV clinical research community advisory boards in Uganda. Journal of Empirical Research on Human Research Ethics, 11(4), 311–321.
Levenson, D. (2010). After Havasupai litigation, native Americans wary of genetic research. American Journal of Medical Genetics, 152A(Part A), IX.
Lidz, C. W., Lorna, J. S., Antonia, V. S., Suzanne, M., William, G., Philip, J. C., Robert, A., & Paul, S. A. (2012). The participation of community members on medical institutional review boards. Journal of Empirical Research on Human Research Ethics, 7(1), 1–8.
Longino, H. E. (1994). In search of feminist epistemology. The Monist, 77(4), 472–485.
Macdonald, N. E., Stanwick, R., & Lynk, A. (2014). Canada’s shameful history of nutrition research on residential school children: The need for strong medical ethics in aboriginal health research. Paediatrics & Child Health, 19(2), 64.
Martin del Campo, F., Casado, J., Spencer, P., & Strelnick, H. (2013). The development of the Bronx Community Research Review Board: A pilot feasibility project for a model of community consultation. Progress in Community Health Partnerships: Research, Education, and Action, 7(3), 341–352.
Mashford-Pringle, A., & Pavagadhi, K. (2020). Using OCAP and IQ as frameworks to address a history of trauma in indigenous health research. AMA Journal of Ethics, 22(10), E868–E873.
Masuda, J. R., Franks, A., Kobayashi, A., & Wideman, T. (2020). After dispossession: An urban rights praxis of remaining in Vancouver’s Downtown Eastside. Environment and Planning D: Society and Space, 38(2), 229–247.
Morton, D. J., Proudfit, J., Calac, D., Portillo, M., Lofton-Fitzsimmons, G., Molina, T., Flores, R., Lawson-Risso, B., & Majel-McCauley, R. (2013). Creating research capacity through a tribally based institutional review board. American Journal of Public Health, 103(12), 2160–2164.
Mosby, I. (2013). Administering colonial science: Nutrition research and human biomedical experimentation in aboriginal communities and residential schools, 1942–1952. Histoiresociale/Social History, 46(1), 145–172. https://doi.org/10.1353/his.2013.0015
Msoroka, M. S., & Amundsen, D. (2018). One size fits not quite all: Universal research ethics with diversity. Research Ethics, 14(3), 1–17.
Neufeld, S. D. (2019). Manifesto endorsement form: Support the research 101 manifesto! [Google form]. Retrieved from: https://docs.google.com/forms/d/1bRMlpbKID7SzORYnKsG8T2JkVjpoTzLfIrmsBeK9dm4/viewform?edit_requested=true
Neufeld, S. D., Chapman, J., Crier, N., Marsh, S., McLeod, J., & Deane, L. A. (2019). Research 101: A process for developing local guidelines for ethical research in heavily researched communities. Harm Reduction Journal, 16, 41.
Newham, J. (2005). An overview of Vancouver’s downtown eastside for UBC learning exchange trek program participants. UBC Learning Exchange.
Pratt, B., Lwin, K. M., Zion, D., Nosten, F., Loff, B., & Cheah, P. Y. (2015). Exploitation and community engagement: Can community advisory boards successfully assume a role minimising exploitation in international research? Developing World Bioethics, 15(1), 18–26.
Quigley, D. (2006). A Review of Improved Ethical Practices in Environmental and Public Health Research: Case Examples From Native Communities. Health Education & Behavior, 33(2), 130–147. http://www.jstor.org/stable/45055734
Quinn, S. C. (2004). Protecting human subjects: The role of community advisory boards. American Journal of Public Health, 94(6), 918–922.
Riddell, J. K., Salamanca, A., Pepler, D. J., Cardinal, S., & McIvor, O. (2017). Laying the groundwork: A practical guide for ethical research with indigenous communities. International Indigenous Policy Journal, 8(2). https://doi.org/10.18584/iipj.2017.8.2.6
Schatz, D. (2010). Unsettling the politics of exclusion: Aboriginal activism and the Vancouver downtown east side. Annual meeting of the Canadian Political Science Association (2010), session M10(b) beyond statistics: Urban indigenous politics.
Schnarch, B. (2004). Ownership, control, access, and possession (OCAP) or self-determination applied to research: A critical analysis of contemporary first nations research and some options for first nations communities. Journal of Aboriginal Health, 1(1), 80–94.
Schroeder, D., Chatfield, K., Singh, M., Chennells, R., & Herissone-Kelly, P. (2019). The san code of research ethics. In Equitable research partnerships (SpringerBriefs in research and innovation governance). Springer. https://doi.org/10.1007/978-3-030-15745-6_7
Shore, N., Drew, E., Brazauskas, R., & Seifer, S. D. (2011a). Relationships between community-based processes for research ethics review and institution-based irbs: A national study. Journal of Empirical Research on Human Research Ethics, 6(2), 13–21.
Shore, N. P., Brazauskas, R. P., Drew, E. P., Wong, K. A., Moy, L., Baden, A. C., et al. (2011b). Understanding community-based processes for research ethics review: A national study. American Journal of Public Health, 101(S1), S359–S364.
Shore, N., Park, A., Castro, P., Wat, E., Sablan-Santos, L., Isaacs, M. L., Freeman, E., Cooks, J. M., Drew, E., & Seifer, S. D. (2014). Redefining research ethics review: Case studies of five community-led models. Community-Campus Partnerships for Health.
Smith, L. T. (1999). Decolonizing methodologies: Research and indigenous peoples. Zed Books.
Solomon-Cargill, S. (2016). Too many rationales, not enough reason: A call to examine the goals of including lay members on institutional review boards. Accountability in Research, 23(1), 4–22.
Solomon-Cargill, S. (2018). What can IRBs learn from CABs? A qualitative analysis of the experiences of recruitment and training of nonscientist members on research review boards. Journal of Empirical Research on Human Research Ethics, 13(1), 88–94.
Sterling, R. L. (2011). Genetic research among the Havasupai – A cautionary tale. Virtual Mentor, 13(2), 113–117. https://doi.org/10.1001/virtualmentor.2011.13.2.hlaw1-1102
Tallbear, K. (2013). An indigenous Feminist approach to DNA politics. In Native American DNA: Tribal belonging and the false promise of genetic science. University of Minnesota Press.
The NAOMI Patients Association, & Boyd, S. (2012). NAOMI research survivors: Experiences and recommendations. Retrieved from: https://drugpolicy.ca/wp-content/uploads/2012/03/NPAreportMarch5-12.pdf
The West Philadelphia Promise Zone. (2018). The Promise Zone research connection takes first place! Retrieved from: http://www.sharedprosperityphila.org/promise_zone_blog/the-promise-zone-research-connection-takes-first-place/
Tremblay, M., Martin, D. H., McComber, A. M., McGregor, A., & Macaulay, A. C. (2018). Understanding community-based participatory research through a social movement framework: A case study of the Kahnawake schools diabetes prevention project. BMC Public Health, 18(487), 1–17.
Tuck, E., & Guishard, M. (2013). Uncollapsing ethics: Racialized scientism, settler coloniality, and an ethical framework of decolonial participatory action research. In Challenging status quo retrenchment: New directions in critical research. (Chapter 1). Information Age Publishing.
Turpel-Lafond, M. E. (2020). In plain sight: Addressing indigenous-specific racism and discrimination in B.C. health care. Government of British Columbia.
U.S Department of Health & Human Services. (2017). Federalwide assurance instructions. Retrieved from: https://www.hhs.gov/ohrp/register-irbs-and-obtain-fwas/forms/fwa-instructions/index.html
United Nations. (2007). United Nations Declaration on the Rights of Indigenous Peoples. Retrieved from: https://www.ohchr.org/en/indigenous-peoples/un-declaration-rights-indigenous-peoples
Watkins, B. X., Shepard, P. M., & Corbin-Mark, C. D. (2009). Completing the circle: A model for effective community review of environmental health research. American Journal of Public Health, 99(Suppl 3), S567–S577. https://doi.org/10.2105/AJPH.2008.149369
Wylie, A. (2003). Why standpoint matters. In R. Figueroa & S. G. Harding (Eds.), Science and other cultures: Issues in philosophies of science and technology (pp. 26–48). Routledge.
Acknowledgements
We would like to acknowledge and thank Scott Neufeld of Brock University for his guidance on the Research 101: A Manifesto for Ethical Research in the Vancouver Downtown Eastside section of this chapter.
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The Community Research Governance Project is funded by the Social Sciences Research Council of Canada (SSHRC, grant # 430-2020-00327). We would like to state that this book chapter was made possible through the funding for this larger project.
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Gunay, A.E., Friesen, P., Doerksen, E.M.A. (2023). Community Research Ethics Oversight: Place, Experience, and Expertise. In: Anderson, E.E. (eds) Ethical Issues in Community and Patient Stakeholder–Engaged Health Research. Philosophy and Medicine, vol 146. Springer, Cham. https://doi.org/10.1007/978-3-031-40379-8_19
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