Ethics and Research with Indigenous Peoples

  • Noreen D. WillowsEmail author
Reference work entry


Many Indigenous peoples have poorer health compared with the settler populations that colonized their territories. States and academic institutions have an obligation to support ethical research with Indigenous peoples that results in the elimination of health disparities. Decolonizing research is required that serves to restore health in conformity with enduring Indigenous values that affirm life. Indigenous peoples may have concerns that health research under the control of outsiders will come to conclusions about Indigenous health disparities that stereotype, pathologize, and/or marginalize Indigenous peoples; be instrumental in rationalizing colonialist perceptions of Indigenous incapacity and the need for paternalistic control of Indigenous interests, or deduce that Indigenous peoples are sick and incapable of self-care. Health research that respects Indigenous self-determination, and is safe, ethical, and useful for participants, requires increased capacity among Indigenous and non-Indigenous peoples alike. Indigenous peoples have the right to control research that generates knowledge affecting their well-being. Community members need workshops and training sessions that will inform them how to negotiate with health researchers, let them know their rights as research participants, and build their skills to conduct their own research. Non-Indigenous researchers require appropriate ethical guidelines to follow and training opportunities that offer guidance on Indigenous ways of knowing, the social determinants of health, strength-based research approaches, community-based participatory research, and how to engage in culturally appropriate ways with Indigenous peoples. Researchers wanting to pursue a specialization in Indigenous health research need support from academic leadership and funding agencies to be successful in their endeavor.


Community-based participatory research Decolonizing research Health disparities Health inequities Indigenous peoples Research ethics 


  1. Allan B, Smylie J. First peoples, second class treatment: the role of racism in the health and well-being of indigenous peoples in Canada. Toronto: The Wellesley Institute; 2015. Accessed 17 Oct 2016.Google Scholar
  2. Angal J, Petersen JM, Tobacco D, Elliott AJ. Ethics review for a multi-site project involving tribal nations in the Northern Plains. J Empir Res Hum Res Ethics. 2016;11(2):91–6.CrossRefGoogle Scholar
  3. Australian Institute of Aboriginal and Torres Strait Islander Studies. AIATSIS guidelines for ethical research in Australian Indigenous studies, 2nd edn. 2012. Accessed 17 Oct 2016.
  4. Bartlett JG, Iwasaki Y, Gottlieb B, Hall D, Mannell R. Framework for aboriginal-guided decolonizing research involving Métis and first nations persons with diabetes. Soc Sci Med. 2007;65(11):2371–82.CrossRefGoogle Scholar
  5. Beavis AS, Hojjati A, Kassam A, Choudhury D, Fraser M, Masching R, Nixon SA. What all students in healthcare training programs should learn to increase health equity: perspectives on postcolonialism and the health of Aboriginal Peoples in Canada. BMC Med Educ. 2015;15(1):155. Accessed 17 Oct 2016.CrossRefGoogle Scholar
  6. Brunger F, Wall D. “What do they really mean by partnerships?” questioning the unquestionable good in ethics guidelines promoting community engagement in Indigenous health research. Qual Health Res. 2016;26(13):1862–77.CrossRefGoogle Scholar
  7. Bryant T, Raphael D, Travers R. Identifying and strengthening the structural roots of urban health in Canada: participatory policy research and the urban health agenda. Promot Educ. 2007;14(1):6–11.CrossRefGoogle Scholar
  8. Canadian Institutes of Health Research. Aboriginal people’s health. 2011. Accessed 17 Oct 2016.
  9. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada. Tri-Council policy statement: ethical conduct for research involving humans. 2014. Accessed 17 Oct 2016.
  10. Carson, D., Gilmore, A., Perry, C., and Gronhaug, K. (2001). Qualitative Marketing Research. London: Sage.CrossRefGoogle Scholar
  11. Castellano MB. Ethics of Aboriginal research. J Aborig Health. 2004;1(1):98–114.Google Scholar
  12. Castleden H, Morgan VS, Lamb C. “I spent the first year drinking tea”: exploring Canadian university researchers’ perspectives on community-based participatory research involving Indigenous peoples. Can Geogr/Géogr Can. 2012;56(2):160–79.CrossRefGoogle Scholar
  13. Castleden H, Sylvestre P, Martin D, McNally M. “I don't think that any peer review committee … Would ever ‘get’ what I currently do”: How institutional metrics for success and merit risk perpetuating the (re)production of colonial relationships in community-based participatory research involving Indigenous peoples in Canada. Int Indigenous Policy J. 2015;6(4.) Accessed 17 Oct 2016
  14. Council of Aboriginal Initiatives, University of Alberta. Elder protocols and guidelines. 2012. Accessed 17 Oct 2016.
  15. First Nations Centre. OCAP: ownership, control, access and possession. Sanctioned by the first nations information governance committee, assembly of first nations. Ottawa: National Aboriginal Health Organization; 2007. Accessed 17 Oct 2016Google Scholar
  16. Food and Agriculture Organization of the United Nations. Indigenous peoples. 2016. Accessed 17 Oct 2016.
  17. Genius SK, Willows N, Nation AF, Jardine C. Through the lens of our cameras: children’s lived experience with food security in a Canadian indigenous community. Child: Care Health Dev. 2014;41:600–10.Google Scholar
  18. Genuis SK, Willows N, Nation AF, Jardine CG. Partnering with Indigenous student co-researchers: improving research processes and outcomes. Int J Circumpolar Health. 2015;74:27–38.CrossRefGoogle Scholar
  19. Gokiert RJ, Willows N, Georgis R, Stringer H, Alexander Research Committee. Wahkohtowin: The governance of good community-academic research relationships to improve the health and well-being of children in Alexander First Nation. Int Indigenous Policy J. under review.Google Scholar
  20. Government of Canada. Panel on Research Ethics. Module 9: Research involving First Nations, Inuit and Metis Peoples of Canada. n.d. Accessed 17 Oct 2016.
  21. Gracey M, King M. Indigenous health part 1: determinants and disease patterns. Lancet. 2009;374(9683):65–75.CrossRefGoogle Scholar
  22. Gray MA, Oprescu FI. Role of non-indigenous researchers in indigenous health research in Australia: a review of the literature. Aust Health Rev. 2015;40(4):459–65.CrossRefGoogle Scholar
  23. Guenther M, Kenrick J, Kuper A, Plaice E, Thuen T, Wolfe P, Zips W, Barnard A. The concept of indigeneity. Soc Anthropol. 2006;14(1):17–32.CrossRefGoogle Scholar
  24. Harding A, Harper B, Stone D, O’Neill C, Berger P, Harris S, Donatuto J. Conducting research with tribal communities: sovereignty, ethics, and data-sharing issues. Environ Health Perspect. 2012;120(1):6–10.CrossRefGoogle Scholar
  25. Health Research Council of New Zealand. Guidelines for researchers on health research involving Māori. Version 2. 2010. Accessed 17 Oct 2016.
  26. Kahnawake Schools Diabetes Prevention Project. Code of research ethics. 2007. Accessed 17 Oct 2016.
  27. LaVeaux D, Christopher S. Contextualizing CBPR: key principles of CBPR meet the indigenous research context. Pimatisiwin. 2009;7(1):1–16. Scholar
  28. Liamputtong P. Performing qualitative cross-cultural research. Cambridge: Cambridge University Press; 2010.CrossRefGoogle Scholar
  29. Liamputtong P. Qualitative research methods. 4th ed. Melbourne: Oxford University Press; 2013.Google Scholar
  30. Liamputtong P. The science of words and the science of numbers. In: Liamputtong P, editor. Research methods in health: foundations for evidence-based practice (chapter 1). Melbourne: Oxford University Press; 2017.Google Scholar
  31. Mosby I. Administering colonial science: nutrition research and human biomedical experimentation in aboriginal communities and residential schools, 1942–1952. Hist Soc/Soc Hist. 2013;46(1):145–72.Google Scholar
  32. National Health and Medical Research Council. Ethical guidelines for research involving Aboriginal and Torres Strait Islander Peoples. 2016. Accessed 17 Oct 2016.
  33. Nunavut Research Institute. About us. 2015. Accessed 17 Oct 2016.
  34. Pigford AE, Willows ND. Promoting optimal weights in aboriginal children in Canada through ecological research. In: O’Dea JA, Eriksen M, editors. Childhood obesity prevention: international research, controversies, and interventions. Toronto: Oxford University Press; 2010. p. 309–20.CrossRefGoogle Scholar
  35. Pigford AE, Dyck Feherau D, Ball GDC, Holt NL, Plotnikoff RC, Veugelers PJ, Arcand E, Nation AF, Willows ND. Community-based participatory research to address childhood obesity: experiences from Alexander first nation in Canada. Pimatisiwin: J Indigenous Aborig Commun Health. 2013;11(2):171–85. Accessed 17 Oct 2016Google Scholar
  36. Ramos H. Does how you measure representation matter?: assessing the persistence of Canadian universities’ gendered and colour coded vertical mosaic. Can Ethn Stud. 2012;44(2):13–37.CrossRefGoogle Scholar
  37. Reading CL, Wien F. Health inequalities and social determinants of aboriginal peoples’ health. Prince George: National Collaborating Centre for Aboriginal Health; 2009. Accessed 17 Oct 2016Google Scholar
  38. Ritchie SD, Wabano MJ, Beardy J, Curran J, Orkin A, VanderBurgh D, Young NL. Community-based participatory research with indigenous communities: the proximity paradox. Health Place. 2013;24:183–9.CrossRefGoogle Scholar
  39. Robertson DL. Decolonizing the academy with subversive acts of Indigenous research. A review of Yakama Rising and Bad Indians. Soc Race Ethn. 2016;2(2):248–52.CrossRefGoogle Scholar
  40. Rotenberg, C. Social determinants of health for the off-reserve First Nations population, 15 years of age and older, 2012. 2016. Accessed 17 Oct 2016.
  41. Sahota, P. C.. Research regulation in American Indian/Alaska Native communities: Policy and practice considerations. 2009. NCAI Policy Research Center. Accessed 17 Oct 2016.
  42. Smith-Morris C. Autonomous individuals or self-determined communities? The changing ethics of research among native Americans. Hum Organ. 2007;66(3):327–36.CrossRefGoogle Scholar
  43. Smylie, J., & Adomako, P.. Indigenous children’s health report: Health assessment in action. 2009. Accessed 17 Oct 2016.
  44. Taualii M, Delormier T, Maddock J. A new and innovative public health specialization founded on traditional knowledge and social justice: native Hawaiian and indigenous health. Hawai’i J Med Publ Health: J Asia Pac Med Publ Health. 2013;72(4):143–5.Google Scholar
  45. Towns C, Cooke M, Rysdale L, Wilk P. Healthy weights interventions in aboriginal children and youth: a review of the literature. Can J Diet Pract Res. 2014;75(3):125–31.CrossRefGoogle Scholar
  46. Triador L, Farmer A, Maximova K, Willows N, Kootenay J. A school gardening and healthy snack program increased aboriginal first nations children’s preferences toward vegetables and fruit. J Nutr Educ Behav. 2015;47(2):176–80.CrossRefGoogle Scholar
  47. UN Office of the High Commissioner for Human Rights (OHCHR), Fact sheet No. 31, The right to health. 2008. Accessed 29 Nov 2016.
  48. United Nation. United Nations declaration on the rights of Indigenous peoples. 2008. Accessed 17 Oct 2016.
  49. United Nations. Indigenous peoples and the United Nations human rights system. Fact sheet No. 9/Rev. 2. New York and Geneva, United Nations. 2013. Accessed 17 Oct 2016.
  50. United Nations. United Nations Permanent Forum on Indigenous Issues. Indigenous peoples, Indigenous voices fact sheet. n.d.. Accessed 17 Oct 2016.
  51. Willows N. Ethical principles of health research involving indigenous peoples. Appl Physiol Nutr Metab. 2013;38(11):iii–v. Scholar
  52. Willows ND, Hanley AJG, Delormier T. A socioecological framework to understand weight-related issues in aboriginal children in Canada. Appl Physiol Nutr Metab. 2012;37(1):1–13. Scholar
  53. Willows N, Dyck Fehderau D, Raine KD. Analysis grid for environments linked to obesity (ANGELO): framework to develop community-driven health programmes in an Indigenous community in Canada. Health Soc Care Community. 2016;24(5):567–75.CrossRefGoogle Scholar
  54. Zavala M. What do we mean by decolonizing research strategies? Lessons from decolonizing, Indigenous research projects in New Zealand and Latin America. Decolonization: Indigeneity Educ Soc. 2013;2(1):55–71.Google Scholar

Copyright information

© Springer Nature Singapore Pte Ltd. 2019

Authors and Affiliations

  1. 1.Faculty of Agricultural, Life and Environmental SciencesUniversity of AlbertaEdmontonCanada

Personalised recommendations