"What Do They Really Mean by Partnerships?" Questioning the Unquestionable Good in Ethics Guidelines Promoting Community Engagement in Indigenous Health Research

Qualitative Health Research

Volumn 26, Issue 13, 2016, Pages 1862-1877

  Brunger, F ^a   Wall, D ^b  

^a MEMORIAL UNIVERSITY OF NEWFOUNDLAND   (Canada)

^b NONE   (Canada)

Author keywords

community and public health; ethics; Labrador; methodology; moral perspectives; participant observation; qualitative; Southern Inuit

Indexed keywords

EID: 84990829782     PISSN: 10497323     EISSN: 15527557     Source Type: Journal    
DOI: 10.1177/1049732316649158     Document Type: Article

References (45)

1. Assembly of First Nations Quebec-Labrador. (2014). First Nations in Quebec and Labrador's research protocol. Retrieved from http://carleton.ca/northernresearch/wp-content/uploads/anglais-web.pdf
2. Aurora Research Institute. (2014). Licensing research. Inuvik, NWT: Aurora research institute. Retrieved from http://nwtresearch.com/licensing-research
3. Australian Institute of Aboriginal and Torres Strait Islander Studies. (2000). Guidelines for ethical research in indigenous studies. Retrieved from http://aiatsis.gov.au/research/ethical-research/guidelines-ethical-research-australian-indigenous-studies
4. Ball J., Janyst P., (2008). Enacting research ethics in partnerships with indigenous communities in Canada: "Do it in a good way." Journal of Empirical Research on Human Research Ethics, 3 (2), 33-51. doi: 10.1525/jer.2008.3.2.33
5. Battiste M., (Ed.). (2000). Reclaiming indigenous voice and vision. Vancouver, British Columbia: UBC press.
6. Battiste M., Henderson J. Y., (2000). Protecting indigenous knowledge and heritage: A global challenge. Saskatoon, Saskatchewan, Canada: Purich.
7. Bernard H. R., Gravlee C. C., (Eds.). (2014). Handbook of methods in cultural anthropology. New York: Rowman & Littlefield.
8. Bourdieu P., (1977). Outline of a theory of practice. Cambridge, UK: Cambridge University Press.
9. Browne A. J., Smye V. L., Varcoe C., (2005). The relevance of postcolonial theoretical perspectives to research in aboriginal health. Canadian Journal of Nursing Research, 37 (4), 16-37.
10. Brunger F., Burgess M., (2005). A cultural understanding of research ethics governance. Health Law Review, 13 (2-3), 69-74.
11. Brunger F., Russell T., (2015). Risk and representation in research ethics: The NunatuKavut experience. Journal of Empirical Research on Human Research Ethics, 10, 368-379. doi: 10.1177/1556264615599687
12. Brunger F., Weijer C., (2007). Politics, risk, and community in the ICBG-Chiapas case. In Lavery J. V., Wahl E. R., Grady C., Emanuel E. J., (Eds.), Ethical issues in international biomedical research: A casebook (pp. 35-42). New York: Oxford University Press.
13. Burgess M. M., Brunger F., (2000). Collective effects of medical research. In McDonald M., (Ed.), The governance of health research involving human subjects (HRIHS) (pp. 117-152). Ottawa: Law Commission of Canada.
14. Canadian Institutes of Health Research. (2007). Guidelines for health research involving aboriginal people. Retrieved from http://www.cihr-irsc.gc.ca/e/29134.html
15. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences, and Humanities Research Council of Canada (2014). Tri-council policy statement: Ethical conduct for research involving humans. Retrieved from http://www.pre.ethics.gc.ca/pdf/eng/tcps2-2014/TCPS-2-FINAL-Web.pdf
16. Castellano M. B., (2004). Ethics of aboriginal research. Journal of Aboriginal Health, 1, 98-114.
17. Castleden H., Morgan V. S., Lamb C., (2012). "I spent the first year drinking tea": Exploring Canadian university researchers' perspectives on community-based participatory research involving indigenous peoples. The Canadian Geographer/Le Géographe Canadien, 56, 160-179.
18. Childs P., Williams P., (2014). Introduction to post-colonial theory. London: Routledge.
19. Clifford J., (2013). Returns: Becoming indigenous in the twenty-first century. Cambridge, MA: Harvard University Press.
20. Dalton R., (2002). Tribe blasts "exploitation" of blood samples. Nature, 420, 111.
21. First Nations Centre. (2007). OCAP: Ownership, control, access and possession. (National Aboriginal Health Organization, Trans.). Ottawa: First Nations Information Governance.
22. Foucault M., (1979). Discipline and punish: The Birth of the prison. New York: Vintage Books.
23. Gordon D. R., Lock M., (Eds.). (1988). Biomedicine examined. New York: Springer.
24. Government of Newfoundland and Labrador. (2011). Health Research Ethics Authority Act (SNL2006 CHAPTER H-1.2[2011]). Retrieved from http://assembly.nl.ca/Legislation/sr/statutes/h01-2.htm
25. Hains S., (2015, 18-20). Prayer. Working better together. A conference on Indigenous research ethics, Listel Hotel, Vancouver, BC.
26. Israel B. A., Schulz A. J., Parker E. A., Becker A. B., (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173-202.
27. Kahnawake Schools Diabetes Prevention Project. (2007). Kahnawake schools diabetes prevention project code of research ethics. Retrieved from http://www.ksdpp.org/media/ksdpp-code-of-research-ethics2007.pdf
28. Kaufert J. M., Glass K. C., Freeman W. L., (2005). Background paper on issues of group, community or First Nation consent in health research (Working paper commissioned by the Aboriginal Ethics Policy Development Project and supported as a joint undertaking of the Canadian Institutes of Health Research-Ethics Office and Institute for Aboriginal Peoples Health). Retrieved from https://www.researchgate.net/publication/228854079-Background-Paper-on-Issues-of-Group-Community-or-First-Nation-Consent-in-Health-Research
29. Keesing R. M., (1992). Custom and confrontation: The Kwaio struggle for cultural autonomy. Chicago: University of Chicago Press.
30. Martin D. H., (2012). Two-eyed seeing: A framework for understanding indigenous and non-indigenous approaches to indigenous health research. Canadian Journal of Nursing Research), 44, 20-42.
31. Mi'kmaq Ethics Watch. (2015). Mi'kmaw research principles and protocols. Retrieved from http://www.cbu.ca/aboriginal-affairs/unamaki-college/mikmaq-ethics-watch/
32. Mosby I., (2013). Administering colonial science: Nutrition research and human biomedical experimentation in aboriginal communities and residential schools, 1942-1952. Histoire Sociale/Social History, 46, 145-172.
33. Musante K., (2015). Participant observation. In Bernard R., Gravlee C., (Eds.), Cultural anthropology (2nd ed., pp 251-292). New York: Rowman & Littlefield.
34. National Congress of American Indians Policy Research Center. (2015). Policy research center (PRC) research regulation toolkit. Retrieved from http://www.ncaiprc.org/research-regulation
35. National Institutes of Health. (2015). Department of Health and Human Services. Part 1. Overview information (Native American Research Centers for Health [NARCH] [S06]. Retrieved from http://grants.nih.gov/grants/guide/pa-files/PAR-12-182.html
36. National Sciences and Engineering Research Council of Canada. (2015). Financial administration guide. Retrieved from http://www.nserc-crsng.gc.ca/Professors-Professeurs/FinancialAdminGuide-GuideAdminFinancier/FundsUse-UtilisationSubventions-eng.asp
37. Nunatsiavut Government. (2013). Research application. Retrieved from http://nainresearchcentre.com/wp-content/uploads/2013/04/NG-Research-Application-October-2013.pdf
38. NunatuKavut Community Council. (2013). Application to conduct research and consultations in the territory of NunatuKavut. Retrieved from http://www.nunatukavut.ca/home/files/pg/application-for-research-with-nunatukavut-january-2013-2.pdf
39. NunatuKavut Community Council Research Advisory Committee. (2013). Guidelines for community engagement with NunatuKavut. Retrieved from http://www.nunatukavut.ca/home/files/pg/guide-for-researchers.pdf
40. Putaiora Writing Group. (2010). Te ara tika. Guidelines for Maori research ethics: A framework for researchers and ethics committee members. Retrieved from https://www.fmhs.auckland.ac.nz/assets/fmhs/faculty/tkhm/tumuaki/docs/teara.pdf
41. Schnarch B., (2004). Ownership, control, access, and possession (OCAP) or self-determination applied to research. Journal of Aboriginal Health, 1, 80-97.
42. Scott J. C., (1990). Domination and the arts of resistance: Hidden transcripts. New Haven, CT: Yale University Press.
43. Smith L. T., (1999). Decolonizing methodologies: Research and indigenous peoples. New York, NY: Zed Books.
44. Social Sciences and Humanities Research Council of Canada. (2014). Not-for-profit organizations applying for institutional eligibility. Retrieved from http://www.sshrc-crsh.gc.ca/about-au-sujet/policies-politiques/statements-enonces/not-for-profit-sans-but-lucratif-eng.aspx
45. Weijer C., Ezekiel E. J., (2000). Protecting communities in biomedical research. Science, 289, 1142-1144.