Résumés
Abstract
Recruitment of study participants from marginalized populations present unique challenges for researchers and associated institutions. Researchers must be aware of the specific adaptations required in the research process in conducting research within and Indigenous populations. Cultural consciousness is key with any research conducted within these populations to understand the past issues that can influence present and future willingness to participate in research. This article aims to provide context and examples where increasing cultural awareness of specific ethical principles during the recruitment phase can affect the study process as well as the researcher themselves. Integrating Indigenous cultural concepts within the recruitment and study design process can help to lay the groundwork for a positive research process as a whole and facilitate an appropriate study environment for all involved.
Keywords:
- recruitment,
- Indigenous,
- ethical,
- challenges,
- research
Résumé
Le recrutement de participants à des études au sein de populations marginalisées présente des défis uniques pour les chercheurs et les institutions associées. Les chercheurs doivent être conscients des adaptations spécifiques requises dans le processus de recherche pour mener des recherches au sein des populations autochtones. La conscience culturelle est essentielle pour toute recherche menée au sein de ces populations, afin de comprendre les problèmes passés qui peuvent influencer la volonté actuelle et future de participer à la recherche. Cet article vise à fournir un contexte et des exemples où une sensibilisation culturelle accrue à des principes éthiques spécifiques pendant la phase de recrutement peut avoir un impact sur le processus d’étude ainsi que sur le chercheur lui-même. L’intégration de concepts culturels indigènes dans le processus de recrutement et de conception de l’étude peut contribuer à jeter les bases d’un processus de recherche positif dans son ensemble et faciliter un environnement d’étude approprié pour toutes les personnes impliquées.
Mots-clés :
- recrutement,
- autochtones,
- éthique,
- défis,
- recherche
Parties annexes
Bibliography
- 1. Vadeboncoeur C, Foster C, Townsend N. Challenges of research recruitment in a university setting in England. Health Promotion International. 2018;33(5):878-86.
- 2. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. 2018.
- 3. Nadalin V, Maar M, Ashbury F, McLaughlin J. Issues in the recruitment and retention of Aboriginal health research participants in Canada. Aboriginal Policy Research Consortium International (APRCi). 2010;44.
- 4. Indigenous Foundations Arts UBC. Indigenous Foundation. 2021.
- 5. Constitution Act. Part 1: Canadian charter of rights and freedoms. 1982.
- 6. UN General Assembly. United Nations Declaration on the Rights of Indigenous Peoples: resolution / adopted by the General Assembly. 2007.
- 7. First Nations Governance Centre. Ownership, Control, Access and Possession. 2021.
- 8. Hyett S, Marjerrison S, Gabel C. Improving health research among Indigenous Peoples in Canada. CMAJ. 2018:190(20):E616-21.
- 9. MacDonald NE, Stanwick R, Lynk A. Canada’s shameful history of nutrition research on residential school children: the need for strong medical ethics in Aboriginal health research. Paediatrics & Child Health. 2014;19(2):64
- 10. Martens K. Inuit files lawsuit for being guinea pigs in late 60s biological experiment. Aboriginal Peoples News. 6 June 2019.
- 11. Absolon K, Willett C. Putting ourselves forward: Location in Aboriginal research. In: Brown L, Strega S, editors. Research as Resistance: Critical, Indigenous, and Anti-oppressive Approaches. Canadian Scholars’ Press; 2005. p. 97-126.
- 12. Garrison NA, Hudson M, Ballantyne LL, et al. Genomic research through an indigenous lens: understanding the expectations. Annual Review of Genomics and Human Genetics. 2019;20:495-517.
- 13. Fitzpatrick EFM, Martiniuk ALC, D’Antoine H, et al. Seeking consent for research with indigenous communities: a systematic review. BMC Medical Ethics. 2016;17:65.
- 14. National Collaborating Centre for Indigenous Health. An overview of Aboriginal health in Canada. July 2013.
- 15. Kolb B, Wallace AM, Hill D, Royce M. Disparities in cancer care among racial and ethnic minorities. Oncology. 2006;20(10):1256-61.
- 16. Smith LT. Decolonizing Methodologies: Research and Indigenous Peoples. Zed Books Ltd.; 2021.
- 17. Dion ML, Diaz Rios C, Leonard K, Gabel C. Research methodology and community participation: a decade of Indigenous social science research in Canada. Canadian Review of Sociology/Revue Canadienne de sociologie. 2020(1):122-146
- 18. Goodman A, Morgan R, Kuehlke R, et al. “We’ve been researched to death”: exploring the research experiences of urban Indigenous peoples in Vancouver, Canada. International Indigenous Policy Journal. 2018;9(2):3.
- 19. Koster R, Baccar K and Lemelin HR. Moving from research ON, to research WITH and FOR Indigenous communities: A critical reflection on community‐based participatory research. The Canadian Geographer/Le Géographe canadien. 2012;56(2):195-210.
- 20. Snow KC, Hays DG, Caliwagan G, et al. Guiding principles for Indigenous research practices. Action Research. 2016;14(4):357-75.
- 21. Aboriginal children used in medical tests commissioner says. CBC News. 31 Jul 2013.
- 22. Schnarch B. 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. International Journal of Indigenous Health. 2004;1(1):80-95.
- 23. Mosby I. Administering colonial science: nutrition research and human biomedical experimentation in aboriginal communities and residential schools, 1942–1952. Histoire sociale/Social history. 2013;46(1):145-72.
- 24. Lux M. Perfect subjects: race, tuberculosis, and the Qu’Appelle BCG Vaccine Trial. Canadian Bulletin of Medical History. 1998;15(2):277-95.
- 25. Blackburn M. First Nation infants subject to “human experimental work” for TB vaccine in 1930s-40s. Aboriginal Peoples News. 24 Jul 2013.
- 26. Hardy K, Clouston K, Zmudzinski M, et al. Decolonizing qualitative research to explore the experiences of Manitoba’s urban Indigenous population living with type 2 diabetes mellitus, obesity and bariatric surgery. BMJ open. 2020;10:e036595.
- 27. Ball J, Janyst P. Enacting research ethics in partnerships with Indigenous communities in Canada: “Do it in a good way”. Journal of Empirical Research on Human Research Ethics. 2008;3(2):33-51.
- 28. Chan HM, Fediuk K, Batal M, et al. The First Nations Food, Nutrition and Environment Study (2008-2018)-rationale, design, methods and lessons learned. Canadian Journal of Public Health/Revue Canadienne de sante publique. 2021;112(Suppl 1):8-19.
- 29. Funnell S, Tanuseputro P, Letendre A, Bearskin LB, Walker J. “Nothing about us, without us.” how community-based participatory research methods were adapted in an indigenous end-of-life study using previously collected data. Canadian Journal on Aging/La Revue Canadienne du vieillissement. 2020;39(2):145-55.
- 30. Kilian A, Fellows TK, Giroux R, et al. Exploring the approaches of non-Indigenous researchers to Indigenous research: a qualitative study. CMAJ Open. 2019;7(3):E504-9.
- 31. Ashery RS, McAuliffe WE. Implementation issues and techniques in randomized trials of outpatient psychosocial treatments for drug abusers: recruitment of subjects. The American Journal of Drug and Alcohol Abuse. 1992;18(3):305-29.
- 32. Nado A. ‘Don’t talk about what you don’t know’: on (not) conducting research with/in Indigenous contexts. Critical Studies in Education. 2013;54(2):203-14.