Ethics and Research with IndigenousPeoples

Noreen D. Willows

AbstractMany Indigenous peoples have poorer health compared with the settlerpopulations that colonized their territories. States and academic institutionshave an obligation to support ethical research with Indigenous peoples that resultsin the elimination of health disparities. Decolonizing research is required thatserves to restore health in conformity with enduring Indigenous values that affirmlife. Indigenous peoples may have concerns that health research under the controlof outsiders will come to conclusions about Indigenous health disparities thatstereotype, pathologize, and/or marginalize Indigenous peoples; be instrumentalin rationalizing colonialist perceptions of Indigenous incapacity and the need forpaternalistic control of Indigenous interests, or deduce that Indigenous peoplesare sick and incapable of self-care. Health research that respects Indigenous self-determination, and is safe, ethical, and useful for participants, requires increasedcapacity among Indigenous and non-Indigenous peoples alike. Indigenous peo-ples have the right to control research that generates knowledge affecting theirwell-being. Community members need workshops and training sessions that willinform them how to negotiate with health researchers, let them know their rightsas research participants, and build their skills to conduct their own research.Non-Indigenous researchers require appropriate ethical guidelines to follow andtraining opportunities that offer guidance on Indigenous ways of knowing, thesocial determinants of health, strength-based research approaches, community-based participatory research, and how to engage in culturally appropriate wayswith Indigenous peoples. Researchers wanting to pursue a specialization inIndigenous health research need support from academic leadership and fundingagencies to be successful in their endeavor.

N.D. Willows (*)Faculty of Agricultural, Life & Environmental Sciences, University of Alberta, Edmonton, AB,Canadae-mail: noreen.willows@ualberta.ca

# Springer Nature Singapore Pte Ltd. 2017P. Liamputtong (ed.), Handbook of Research Methods in Health Social Sciences,DOI 10.1007/978-981-10-2779-6_49-1

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KeywordsCommunity-based participatory research • Decolonizing research • Health dis-parities • Health inequities • Indigenous peoples • Research ethics

Contents1 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 Indigenous Peoples and Right to Self-Determination in Health Research . . . . . . . . . . . . . . . . . . 43 Barriers to Addressing Health Inequities and Health Disparities Experienced by

Indigenous Peoples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 54 The Right of Indigenous Peoples to Participate in Decolonizing Research that

Improves Health and Well-Being . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65 Research Frameworks for Research with Indigenous Peoples: Examples from Canada . . . 86 Institutional Research Guidelines: Canada and New Zealand . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

6.1 Canada: Tri-Council Policy Statement: Ethical Conductfor Research Involving Humans: TCPS 2 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

6.2 Ethical Guidelines for Health Research with Māori in New Zealand . . . . . . . . . . . . . . . . . 137 Guidelines for Health Research Developed by Indigenous Communities or Agencies . . . . 148 Building Capacity to Do Ethical Research with Indigenous Peoples . . . . . . . . . . . . . . . . . . . . . . . 15

8.1 Institute on the Ethics of Research with Indigenous Peoples . . . . . . . . . . . . . . . . . . . . . . . . . 168.2 Centre for Excellence in Indigenous Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 178.3 Community-Based Research and Evaluation Certificate Program . . . . . . . . . . . . . . . . . . . . 178.4 Master of Public Health: Native Hawaiian and Indigenous Health Specialization . . . 188.5 Community Mobilization for Healthy Lifestyles and Diabetes Prevention

Training Program . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 188.6 Summer Research Training Institute for American Indian and Alaska Native

Health Professionals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 199 Conclusion and Future Directions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21

1 Introduction

The United Nations Declaration on the Rights of Indigenous Peoples was adopted bythe General Assembly in 2007 (United Nations 2008). Article 24 of the Declarationindicates that States will take the necessary steps to ensure that Indigenous individ-uals have an equal right to the enjoyment of the highest attainable standard ofphysical and mental health. Given this proclamation, this chapter argues that Statescan help to ensure that a high standard of health is achieved by Indigenous peoplesby supporting ethically conducted, innovative research programs based on scientificexcellence and Indigenous community collaboration. State-supported research ofthis nature is occurring in some countries. For instance, the Institute of AboriginalPeoples’Health (IAPH) is one institute of the Canadian Institutes of Health Research(CIHR), Canada’s federal funding agency for health research. IAPH supports healthresearch that is conducted using the highest ethical and moral standards and thatrespects Aboriginal cultures, while generating new knowledge to improve the healthand well-being of Aboriginal peoples (Canadian Institutes of Health Research 2011).

This chapter discusses how States, academic institutions, and Indigenous groupscan support ethical research with Indigenous peoples, communities, and nations. It

2 N.D. Willows

builds on an editorial that I wrote about the requirement for ethical principles ofhealth research involving Indigenous peoples in Canada (Willows 2013). Theeditorial followed revelations by a historian in 2013 that a series of egregiousnutrition studies had been conducted in Canada in the 1940s and 1950s by federalgovernment scientists, bureaucrats, and university researchers that used malnour-ished First Nations children and adults as experimental material and their commu-nities as laboratories for scientific experimentation (Mosby 2013). In the studies,researchers had exclusive control over the research process and the use of results,and they did not return meaningful results to the communities. There was noevidence that these studies resolved the malnutrition, hunger, or suffering of thechildren or community members included in them; rather, the beneficiaries werethose who lead the research, as carrying out these studies furthered their ownprofessional and political interests (Mosby 2013). While it is unlikely today thathealth research that violates the inalienable rights of research participants such as theprovision of informed consent would be sanctioned within Canada, it is possible thatIndigenous peoples’ unique rights might be violated, or that unique considerationsfor conducting research with Indigenous peoples would not be followed. For exam-ple, researchers may not discern that their research creates an imbalance of powerbetween them and Indigenous research participants; that it devalues traditionalIndigenous knowledge in favor of Western scientific knowledge; that it violatescommunity norms; or, that the findings misrepresent or stigmatize communitymembers (Canadian Institutes of Health Research, Natural Sciences and EngineeringResearch Council of Canada, and Social Sciences and Humanities Research Councilof Canada 2014, p. 109).

In this chapter, I discuss why scientifically rigorous health research that takes intoaccount Indigenous rights is urgently needed as well as some of the considerationsfor conducting ethical research with Indigenous peoples. I will refer mostly to theCanadian literature on these topics due to my familiarity with the material. Althoughthe chapter has broad applicability to research with Indigenous populations in manycountries, it will likely have the greatest application to Indigenous groups inAustralia, Canada, New Zealand, and the United States for several reasons. TheIndigenous peoples in Canada have geographical and/or cultural contiguity withmany of the Indigenous peoples in the United States. All four countries are Western,liberal democracies, originally settled by colonizers who were predominantly ofEuropean-ancestry. Indigenous peoples in these countries are united by similaritiesin their colonial treatment by settler populations whereby colonization resulted insettlers usurping the land and resources of the local Indigenous peoples and expro-priating and/or suppressing Indigenous peoples’ lives and identities. Indigenouspeoples in all four countries have poorer socioeconomic and health outcomes incomparison to the settler majority (see also “Kaupapa Maori Health Research,Culturally Safe Research with Vulnerable Populations and Indigenous Statistics”).

Given the geopolitical focus of this chapter, the term Indigenous used herein hasthe greatest applicability to Métis, First Nations, and Inuit peoples in Canada(collectively called Aboriginal peoples in Section 35 of Canada’s Constitution Actof 1982); Aboriginal peoples and Torres Strait Islanders in Australia; Māori in

Ethics and Research with Indigenous Peoples 3

New Zealand; and, American Indians, Alaska Natives (i.e., Inuit, Yupik, and Aleutpeoples), and Native Hawaiians in the United States. It is important to bear in mindthat settler governments conjured these terms for Indigenous peoples for politicaland jurisdictional purposes. Indigenous populations have much greater culturaldiversity than ascribed by these labels, and may choose to use their own group’scultural name when referring to themselves, as a decolonizing action, as a meansto achieve self-determination, and for increased accuracy of identity (Allan andSmylie 2015).

The perspective of ethical research that I present partially reflects my professionalexperiences as a non-Indigenous health researcher working in an academic environ-ment. My career has focused predominantly on nutrition research with First Nationscommunities in Canada, including the development, implementation, and evaluationof nutrition interventions (e.g., Pigford and Willows 2010; Triador et al. 2015). I aimto adopt a community-based participatory research (CBPR) approach to the workthat I do, whereby I partner with First Nations community members to find culturallyappropriate solutions to their nutrition concerns or nutrition-related health condi-tions. The viewpoints that I express in this chapter stems from my interest inarticulating the practice and outcomes of CPBR with First Nations peoples (Pigfordet al. 2013; Willows et al. 2016; Gokiert et al. under review); what constitutes ethicalresearch with Indigenous peoples (Willows 2013); how to copartner with FirstNations peoples (Genuis et al. 2014, 2015; Willows et al. 2016); and developingculturally appropriate frameworks to conceptualize Indigenous peoples’ healthissues (Willows et al. 2012).

2 Indigenous Peoples and Right to Self-Determinationin Health Research

There is no singularly authoritative definition of Indigenous peoples under interna-tional law and policy although criteria to help identify Indigenous peoples have beenestablished by the United Nations (United Nations 2013; United Nations, n.d.).These criteria include peoples who have historical continuity with precolonialand/or presettler societies that developed on their territories; consider themselvesto have distinct social, economic, or political systems, language, culture, and beliefsdistinct from other sectors of the societies now prevailing on their territories, or partsof them; have strong linkages to territories and surrounding natural resources; andform at present nondominant groups of society that resolve to maintain and repro-duce their ancestral environments and systems as distinctive peoples, in accordancewith their own cultural patterns, social institutions, and legal systems. Based on thesecriteria, in 2016 there were more than 390 million Indigenous peoples worldwide(Food and Agriculture Organization of the United Nations 2016).

The label of “indigeneity” serves a pragmatic purpose, as it allows a diversity ofgroups, societies, and nations to resist domination by settler populations and todemand their entitlement to their rights as Indigenous peoples. Indigenous rights isabout “unfolding in practice such notions as equality, procedural justice and a

4 N.D. Willows

universal right of self-determination that the idea of human rights has alwayspromised” (Guenther et al. 2006, p. 28, italicized in original). The application ofthe right to self-determination for Indigenous groups, societies, and nationsrequires recognition of collective rights, self-governance, and autonomy andcontrol of lands and resources (Guenther et al. 2006). Fundamental to the exerciseof self-determination, Indigenous peoples have the right to control research thatgenerates knowledge affecting their cultural heritage (including their traditionalknowledge, traditional cultural expressions, and intellectual property), identity andwell-being, and to construct knowledge in accordance with self-determined defini-tions of what is real and what is valuable (Castellano 2004; Australian Institute ofAboriginal and Torres Strait Islander Studies 2012; see also “Indigenist andDecolonizing Research Methodology”).

3 Barriers to Addressing Health Inequities and HealthDisparities Experienced by Indigenous Peoples

Improved health and well-being for Indigenous peoples through research is desiredby Indigenous and non-Indigenous peoples alike. However, there are many barriersthat prevent the undertaking of high-quality, ethical health research. Many Indige-nous communities do not have the financial or internal human resources to addressthe health disparities that they face. For example, due to policies and practices thatemerged from colonial ideologies, Indigenous peoples in Canada have low highschool completion rates and often do not achieve a postsecondary education (Allanand Smylie 2015). Consequently, Canadian universities report an under-representation of Indigenous scholars in their professoriate (Ramos 2012) meaningthat there are few academically trained health researchers who are Indigenous.Non-Indigenous health researchers may be reluctant to engage in research withIndigenous peoples, based on perceived barriers to conducting research with Indig-enous peoples, some which have been articulated elsewhere (Castleden et al. 2015).

Fears that have been expressed to me by non-Indigenous colleagues aboutengaging in health research in Indigenous communities are that the requirementsfor undertaking ethical and collaborative research with Indigenous communities willprevent research from being scientifically rigorous, will lengthen the time to doresearch, and will limit the number of publications produced from the research.These concerns are generally unfounded as long as academics are supported by theirinstitutions and funding agencies to undertake ethical and collaborative research.While research with Indigenous peoples can require an extensive commitment oftime, academic scholars have established credible scientific careers based onresearch partnerships with Indigenous communities. I have been fortunate to receivesalary awards from my Provincial Government through Alberta Innovates HealthSolutions, and before that, the Alberta Heritage Foundation for Medical Researchthat reduced my teaching and administrative load at the University of Alberta, givingme the time to fully engage with First Nations partners. Thus, it is my contention thatmany of the barriers that academic researchers perceive limit the production of high-

Ethics and Research with Indigenous Peoples 5

quality research that addresses Indigenous health issues could be overcome ifacademic scholars were better supported by academic departments and faculties toengage with Indigenous communities in a respectful way.

Indigenous peoples have the right to know about their health status; the causes,nature, and treatment of their ill-health; and the resources available to improve theirhealth (UN Office of the High Commissioner for Human Rights 2008). The task ofundertaking health research in Indigenous communities to address these topics oftenfalls to non-Indigenous peoples, many who have been trained exclusively in Westernways of knowing and conducting science, and who may have little knowledge ofIndigenous peoples. Indigenous peoples may be reluctant to engage with thesehealth researchers due to concerns that research under the control of outsiders toIndigenous communities will come to conclusions about Indigenous health dispar-ities that stereotype, pathologize, and/or marginalize Indigenous peoples; be instru-mental in rationalizing colonialist perceptions of Indigenous incapacity and the needfor paternalistic control of Indigenous interests; deduce that Indigenous peoples aresick and incapable of self-care; and appropriate or not value traditional knowledge orcultural practices (Castellano 2004; Gracey and King 2009; Reading andWien 2009;Smylie and Adomako 2009; Willows 2013; Adam and Smylie 2015). The dilemmafor Indigenous communities with pressing health concerns is that they may feelcompelled to engage with researchers who lack experience with research approachesand methodologies that are appropriate for an Indigenous research context such asbeing respectful of traditional knowledge, cultural practices and beliefs. There maybe concerns that the approaches taken will not be inclusive of Indigenous perspec-tives, processes, and ways of learning/knowing; will not recognize colonization andexclusionary social policies as Indigenous health determinants; will not take astrength-based approach to research but rather one based on deficits and victim-blaming; and will not use approaches that recognize the potential trajectories of thesocial determinants of health across the life course (Bartlett et al. 2007; Reading andWien 2009; Pigford et al. 2013).

4 The Right of Indigenous Peoples to Participatein Decolonizing Research that Improves Health and Well-Being

Decolonizing research is required that serves to restore order to daily living inconformity with ancient and enduring Indigenous values that affirm life (Castellano2004; see also “Indigenist and Decolonizing Research Methodology and Using anIndigenist Framework for Decolonizing Health Promotion Research”). Table 1outlines some aspects of such life-affirming decolonizing research. Indigenouspeoples, according the United Nations Declaration on the Rights of IndigenousPeoples, have the right to maintain, control, protect, and develop their intellectualproperty over traditional knowledge. In Canada, Ownership, Control, Access, andPossession (OCAP1 is a registered trademark of the First Nations InformationGovernance Centre (FNIGC)) (www.FNIGC.ca/OCAP) research principles offer a

6 N.D. Willows

First Nations approach to research, and data and information management, whichhelp to ensure First Nations aspirations towards self-determination and self-governance. These principles affirm that a First Nations community owns researchinformation collectively (Ownership); is within its rights to seek control over allaspects of research and information management processes which impact it

Table 1 Aspects of life-affirming decolonizing research with Indigenous populations

Aspect of decolonizing research Sample reference

Aims to create knowledge for social benefit Castellano (2004),Gray and Oprescu (2015),Robertson (2016)

Follows a code of ethics based on rules ofconduct which distinguish between acceptableand unacceptable research practices, andexpresses and reinforces important indigenoussocial and cultural values

Castellano (2004),First Nations Centre (2007)

Addresses the hierarchical relation of powerthat privileges academic over local, indigenousknowledge by incorporating or honoringresearch methods and theories rooted inindigenous knowledge

Bartlett et al. (2007),Castellano (2004),Zavala (2013)

Includes indigenous elders or other keeps ofcultural knowledge in the design and executionof research, and the interpretation of findings inthe context of cultural norms and traditionalknowledge

Castellano (2004), Canadian Institutes ofHealth Research, Natural Sciences andEngineering Research Council of Canada, andSocial Sciences and Humanities ResearchCouncil of Canada (2014)

Explicitly recognizes the right of indigenouscommunities and nations to be self-determinedand self-governed in matters relating to theirinternal and local affairs

Castellano (2004)

Controlled by indigenous people, whichovercomes the ineffectiveness of externallyimposed and expert-oriented forms of researchand helps to prevent the production ofknowledge of little value to indigenouscommunities

Bartlett et al. (2007),Castellano (2004),Zavala (2013)

Use strength-based rather than deficit-basedresearch approaches

Pigford et al. (2013)

When research involves communities, use acommunity-based participatory researchapproach whereby community members areequal partners in the research process withresearchers from outside of the community

Bartlett et al. (2007), Castellano (2004),Castleden et al. (2012), LaVeaux andChristopher (2009), Pigford et al. (2013),Zavala (2013)

When working with communities, considerincluding a research partnership agreement“that represents a formal summary of rights,responsibilities and good faith between theparties entering into a partnership to jointlyconduct research”

First Nations Centre (2007, p. 11)

Ethics and Research with Indigenous Peoples 7

(Control); has access to the information and data about their community (Access);and can have physical control of research data (Possession) (First Nations Centre2007).

Below, I expand on the practices and considerations for decolonizing and ethicalresearch with Indigenous communities, using examples from Indigenous researchframeworks, ethic guidelines developed for academic researchers working withIndigenous peoples in Canada and New Zealand, and research guidelines developedby Indigenous agencies or communities to ensure ethical research. The guidelinesand frameworks are meant to ensure that research is ethical, culturally appropriate,collaborative, meaningful, and beneficial to Indigenous communities. Concernsabout the implementation of some of these practices and considerations are outsidethe scope of this chapter to discuss in detail. For instance, there may be inconsis-tencies in ethical requirements between institutional review boards/academicresearch ethics boards and Indigenous review boards, lack of clarity about whethercommunity self-determination is more important than individual autonomy in deci-sions about research participation, concerns that the rigidity of institutional reviewboards/academic research ethics boards requirements to “protect” Indigenous com-munities ironically undermines community self-determination, contested issuesaround academic freedom and research findings as intellectual property, and theexpense and challenges of conducting community-based participatory research(Smith-Morris 2007; Ritchie et al. 2013; Angal et al. 2016; Brunger and Wall 2016).

5 Research Frameworks for Research with IndigenousPeoples: Examples from Canada

In Canada, several Aboriginal-specific frameworks for decolonizing research andhealth promotion activities exist that de-emphasize the focus on individual-level riskfactors for disease and instead highlight the contributions of social and environmen-tal conditions to the divergence in health status between Indigenous andnon-Indigenous peoples. A process framework has been developed for Aboriginal-guided decolonizing research that privileges Indigenous ways of learning/knowing.It employs iterative, culturally based, and process-oriented methods (Fig. 1). It wasreported that implementing this framework in research involving Métis and FirstNations peoples with diabetes increased the efficiency and effectiveness of theresearch process (Bartlett et al. 2007).

Some Canadian frameworks use a social-ecological approach that recognizes thatindividuals are embedded within social, economic, and political systems that shapehealth behaviors and access to resources necessary to maintain health. The Inte-grated Life Course and Social Determinants Model of Aboriginal Health is apopulation-focused conceptual framework for understanding the relationshipbetween various health dimensions and the social determinants, categorized asproximal, intermediate, and distal. It also examines potential trajectories of healthacross the life course (Reading and Wien 2009). Not taking social-ecological factorsinto account can result in failed health interventions. This was the conclusion of a

8 N.D. Willows

review of seven healthy weight interventions specifically aimed at First Nations orAmerican Indian children and youth (Towns et al. 2014). Only two of the interven-tions included environmental or policy components that supported behavior change.The authors of the review concluded that the ineffectiveness of the interventions toreduce obesity or overweight was because structural factors in the social, economic,and physical environments where the Indigenous children and youth lived preventedthem from making the behavioral changes required to have a healthy body weight.

The Integrated Life Course and Social Determinants Model of Aboriginal Healthprovides an analytical guide to explore the relationships between the social deter-minants of health (SDoH) and health outcomes among First Nations people livingoff-reserve as captured in the 2012 national Aboriginal Peoples Survey (Rotenberg2016). SDoH were examined using the categories of the model as follows: proximal(health behaviors, physical and social environment); intermediate (community infra-structure, resources, systems, and capacities); and distal (historic, political, social,and economic). This approach permitted the researcher to determine which SDoHassessed at the three levels had the greatest impact on the likelihood of a FirstNations person having a chronic condition, poor or fair self-rated general health, orpoor or fair self-rated mental health. For example, when proximal determinants wereexamined, those related to negative health outcomes were smoking, obesity, living in

(3) Facilitating

(4) Experiencing

(5) Accepting

(6) Enacting

(1) Rationalizing

(2) Enabling

Decolonizing Research– Negotiating Research

Relationships

DecolonizingResearch

– Using Indigenousmethods

Decolonizing Research– Recognizing

Reciprocal CapacityBuilding

Decolonizing Research– Crediting Indigenous

knowledge

Decolonizing Research– AboriginalGuidedResearch Process

Decolonizing Research– ParticipatoryAction

Research

Fig. 1 Process framework for decolonizing research (Bartlett et al. 2007) (Reprinted from SocialScience & Medicine, 65(11), Bartlett, J. G., Iwasaki, Y., Gottlieb, B., Hall, D., & Mannell, R.Framework for Aboriginal-guided decolonizing research involving Métis and First Nations personswith diabetes, pages 2371-2382, 2007, with permission from Elsevier)

Ethics and Research with Indigenous Peoples 9

a dwelling where major repairs were needed, having less than a high schooleducation or being unemployed, living in a low-income household, or experiencinghousehold food insecurity. The compounding effects of having multiple points ofsocial disadvantage on health were explored by examining the exacerbating effectsof intersecting SDoH. The results showed that the likelihood of reporting any of thethree negative health outcomes increased as the number of social determinants ofpoor health increased. It was evident from study findings that health behaviors aswell as environmental and social conditions impact the health outcomes of FirstNations people living off-reserve, thus individual, family, and community interven-tions are all required to improve health (Reading and Wien 2009).

Willows et al. (2012) developed a Socioecological framework to understandweight-related issues in Aboriginal children that highlighted the need to understandchildhood obesity within the context of inequities in the social determinants of health(Fig. 2). The framework focuses on the many environments at different times inchildhood that influence an Aboriginal child’s weight status, including prenatal,sociocultural, family, community, and policy environments. The framework high-lights historical and ongoing factors related to children having an unhealthy bodyweight, including colonization by Europeans, dispossession of Aboriginal peoplesfrom their traditional lands, and assimilation policies which influence all othersocioecological levels (i.e., individual; intrapersonal; community, home, sociocul-tural; built environment; and society).

6 Institutional Research Guidelines: Canadaand New Zealand

Health research ethics guidelines for Indigenous peoples should deal minimally withissues such as the nature of the relationship between the researcher and the researchparticipant; ownership of and access to data; conflict of interest; consent to research;privacy and confidentiality; and measures to preserve human dignity (First NationsCentre 2007). Various guidelines for research with Indigenous peoples exist isAustralia, Canada, New Zealand, and the United States. For example, in Australiathere are ethical guidelines for research involving Aboriginal and Torres StraitIslander People, which were last revised in 2004, that indicate that research mustbe conducted in an ethical and culturally safe and appropriate manner as to protectthe health, safety, and well-being of Aboriginal and Torres Strait Islander peoplesand their communities (National Health and Medical Research Council 2016). TheAustralian Institute of Aboriginal and Torres Strait Islander Studies (2012) alsocreated Guidelines for Ethical Research in Australian Indigenous Studies to ensurethat research with and about Indigenous peoples follows a process of meaningfulengagement and reciprocity between the researcher and the individuals and/orcommunities involved in the research. In the United States, there are various codesof ethics and guidelines for researchers and scholars working on projects related toNative Americans, Alaska Natives, or Native Hawaiian peoples. However, asrecently as 2009, concerns were expressed that issues such as tribal sovereignty

10 N.D. Willows

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Ethics and Research with Indigenous Peoples 11

were still not adequately protected by current legislation (Sahota 2009). The websiteof the National Congress of American Indians’ Policy Research Center (http://www.ncai.org/policy-research-center/initiatives/research-regulation) provides resources tosupport tribes and American Indian and Alaska Native communities working todevelop research oversight processes and policies. For the sake of brevity, onlyhealth research ethics guidelines from Canada and New Zealand will be described inthis chapter.

6.1 Canada: Tri-Council Policy Statement: Ethical Conductfor Research Involving Humans: TCPS 2

Institutions eligible to receive funding from Canada’s three federal research agencies– the Canadian Institutes of Health Research, the Natural Sciences and EngineeringResearch Council of Canada, and the Social Sciences and Humanities ResearchCouncil of Canada – must agree to adhere to the Tri-Council Policy Statement:Ethical conduct for research involving humans (known as the TCPS 2) as a conditionof funding (Canadian Institutes of Health Research, Natural Sciences and Engineer-ing Research Council of Canada, & Social Sciences and Humanities ResearchCouncil of Canada 2014). Research Ethics Boards at Canadian Universities mustensure the application of the TCPS 2 to human research. The TCPS 2 was lastrevised in 2014. Chapter 9 is titled “Research Involving the First Nations, Inuit andMétis Peoples of Canada.” It is designed to serve as a framework for the ethicalconduct of research involving the Indigenous peoples of Canada, but is not intendedto overrule or replace ethical guidance offered by Aboriginal peoples themselves. Anonline tutorial is available to help researchers to understand Chapter 9 (Governmentof Canada n.d.).

It is intended that research that follows Chapter 9 guidelines will reflect Aborig-inal worldviews, and will benefit Aboriginal peoples or communities. The chapteroffers guidance on how to respect a community’s cultural traditions, customs, andcodes of practice. For example, Article 9.15 relates to the recognition of the role ofElders and other knowledge holders in the design and execution of research, and theinterpretation of findings in the context of cultural norms and traditional knowledge.Aboriginal Elders are often the most knowledgeable persons about Indigenouscultural rules and traditions, perceptions of physical and spiritual reality, the teachingand practices of ceremony, and the nuances of meaning in Indigenous languages.

Chapter 9 interprets in nine articles how the value of respect for human dignityand the core principles of Respect for Persons, Concern for Welfare, and Justicediscussed in other chapters of the TCPS 2 apply specifically to research involvingAboriginal peoples in Canada. For example, Respect for Persons in an Aboriginalcontext goes beyond securing free, informed and ongoing consent of participants. Italso includes obligations to maintain, and pass on to future generations, knowledgereceived from ancestors. The principle of Concern for Welfare goes beyond consid-erations for individual well-being to considerations for the welfare of the Aboriginalcommunity to which participants belong. Justice may be compromised when an

12 N.D. Willows

imbalance of power prevails between researchers and participants. With researchinvolving Aboriginal peoples, the social, cultural, or linguistic distance betweenparticipants and researchers may be significant, thus, engagement between thecommunity involved in research and the researchers, initiated prior to recruitingparticipants and maintained over the course of the research, is recommended as anintegral aspect of ethical research.

The ethics review process at the University of Alberta (UAlberta) where I work inCanada will be used here as an example of how Chapter 9 of the TCPS 2 is ensured.UAlberta requires that all research involving humans conducted by staff or studentsaffiliated with UAlberta, or involving UAlberta resources, must be reviewed andapproved by one of UAlberta’s Research Ethics Boards before the research starts.The Boards ensure that research projects involving human participants, identifiabledata, and/or human biological material meet the requirements of the TCPS 2 andUAlberta policy, as well as any applicable provincial, federal, and other legislationand regulations. Research with Aboriginal peoples conducted by UAlberta staff orstudents must include community engagement to ensure that Aboriginal peopleshave a role in the research that affects them. As of 2016, applicants seeking ethicsapproval for research involving Aboriginal peoples are required to answer questionsrelating to topics such as obtaining consent from Elders, leaders, or other communityrepresentatives; details about whether property or private information belonging tothe group as a whole is studied or used; details about whether the research isdesigned to analyze or describe characteristics of the group; details about whetherindividuals are selected to speak on behalf of or otherwise represent the group;information regarding consent; information about the access, ownership, and sharingof research data with communities; information about how final results of the studywill be shared with the participating community; and, the nature of researchagreements.

Appropriate protocol must be followed when researchers seek the advice ofElders and when they acknowledge the contributions of Elders to their research.Researchers may be unfamiliar with these protocols. The Council of AboriginalInitiatives at UAlberta has therefore published a document related to Elder protocoland guidelines to help researchers meet the guidelines of Chapter 9 of the TCPS2 (Council of Aboriginal Initiatives, University of Alberta 2012).

6.2 Ethical Guidelines for Health Research with Māoriin New Zealand

The document Guidelines for Researchers on Health Research Involving Māori(version 2) was created in 2010 by the Māori Health Committee (MHC) of theHealth Research Council of New Zealand (HRC) (Health Research Council ofNew Zealand 2010). Its aim is to assist researchers who have received HealthResearch Council funding to undertake biomedical, public health, or clinicalresearch involving Māori participants or research on issues relevant to Māori health.The intent of the Guidelines is to help develop research that contributes to Māori

Ethics and Research with Indigenous Peoples 13

health development whenever possible, and partnerships between health researchersand Māori communities or groups on issues important to Māori health. The Guide-lines state that the principles of partnership and sharing implicit in the Treaty ofWaitangi, New Zealand’s founding document which describes principles for apartnership between the government and Māori, should be respected by researchersand, where applicable, should be incorporated into all health research proposals.Three principles are particularly relevant in the proceedings and processes of ethicscommittees relating to research with Māori. There is the principle of Partnership,which means working together with iwi (tribes or nations that form the structure ofMāori society), hapu (clans or descent groups within each iwi), whanau (extendedfamilies or family groups), and Māori communities to ensure Māori individual andcollective rights are respected and protected. There is the principle of Participation,meaning that Māori will be involved in the design, governance, management,implementation, and analysis of research. There is the principle of Protection,meaning that the research process will actively protect Māori individual and collec-tive rights, Māori data, and Māori culture, cultural concepts, values, norms, prac-tices, and language.

The Guidelines require that researchers conducting research on a Māori healthissue and/or involving Māori as participants need to start initial consultation andconversations with Māori before putting the research proposal together. Ongoingconsultation throughout the research is urged. Researchers must acknowledge Māoriways of knowing and conducting research. When a project involves Māori within agiven geographical area as participants, researchers must contact local Māori repre-sentative organizations, advise them of the nature of the intended study, and invitetheir comments and/or involvement. Research must not desecrate or contribute to theerosion of Māori cultural values. (See also “Kaupapa Māori Health Research,Culturally Safe Research with Vulnerable Populations and Indigenous Statistics.”)

7 Guidelines for Health Research Developed by IndigenousCommunities or Agencies

Many Indigenous communities and organizations in Australia, Canada,New Zealand, and the United States have taken up the challenge of conductingand monitoring research to ensure local involvement. Some Indigenous communitieshave developed their own codes of research conduct (e.g., Kahnawake SchoolsDiabetes Prevention Project 2007; Pigford et al. 2013), and Indigenous organizationshave formed their own ethic review panels and boards, which function separatelyfrom University Institutional Review Boards/Research Ethics Boards (e.g., Sahota2009; Harding et al. 2012; Angal et al. 2016). The existence of community codes ofresearch conduct as well as independent Indigenous ethics panels and boards meansthat a single research project may require multiple authorizations to proceeddepending on the nature, scope, and location of the research activity.

Space does not permit a review of the numerous research guidelines developedindependently by Indigenous agencies and communities that outline local principles

14 N.D. Willows

of research conduct. Typically, these guidelines provide ethical considerationsregarding local perspectives and values, provide for optimal community oversightof the research, and help ensure that research addresses community concerns andexpectations. They may focus on ensuring that research adheres to values thatUniversity Institutional Review Boards/Research Ethics Boards might overlooksuch as the interdependent relationship between humans and natural elements,recognizing community as a unit of identity, awareness that any particular event orphenomenon functions as part of a larger whole, or safeguarding cultural andintellectual heritage (Harding et al. 2012; Brunger and Wall 2016). For example,all research occurring in the predominantly Inuit-occupied territory of Nunavut innorthern Canada is licensed by the Nunavut Research Institute in accordance withthe Nunavut’s Scientists Act, which helps ensure that research is collaborative andaddresses Nunavut’s needs and priorities (Nunavut Research Institute 2015).

8 Building Capacity to Do Ethical Research with IndigenousPeoples

Indigenous researchers trained asWestern health professionals but who are groundedin their Indigenous identities are an important, but small, cadre of researchers.Australia, Canada, New Zealand, and the United States all have too few Indigenousscholars available to conduct all of the health research required with Indigenouspeoples. This under-representation among the professoriate means that training toundertake ethically conducted Indigenous health research is required fornon-Indigenous scholars. Researchers who are not Indigenous need to develop acapacity to bracket Western research paradigms and assumptions in order to becomeknowledgeable about Indigenous paradigms (Bartlett et al. 2007). Even Indigenousscholars conducting research can benefit from formal training in decolonizingresearch if they have become alienated from their culture, if they do not holdtraditional Indigenous world views, or if they are not familiar with how to conductsuch research.

Health research with Indigenous peoples that respects Indigenous self-determination, and is safe, ethical, and useful for participants, requires increasedcapacity among Indigenous and non-Indigenous peoples alike. Researchers regard-less of their indigeneity require, in addition to conventional health research trainingthat emphasizes a biomedical model of illness and disease, training that focuses onunderstanding the SDoH in relation to disease occurrence and patterns. Conventionalhealth research often dictates the use of positivism as a scientific paradigm, wherebyresearchers, in their search for an ultimate reality, are to be value free and objective intheir approach to research, and detached from research participants to ensure thatresearchers and their research “subjects” do not influence each other (see “Indige-nous Statistics”). While there is value in this paradigm, research with Indigenouspeoples may require a more interpretivist approach which is receptive to capturingmeanings in human interaction and making sense of what is perceived as reality(Carson et al. 2001).

Ethics and Research with Indigenous Peoples 15

As stated already in this chapter, many of the health inequities experienced byIndigenous peoples are the result of historic and current national and local policiesdesigned to eliminate and/or assimilate Indigenous people. Research that is designedto address and eliminate the health and socioeconomic inequities faced by Indige-nous peoples requires researchers to have knowledge of history, policy, healthdeterminants, ethics, and Indigenous rights issues. Researchers must value thelived experience of participants by focusing on the meaning and interpretation thatindividuals place on events (Liamputtong 2013, 2017). Researchers must have anattitude of mutuality and openness, self-awareness, and self-reflexiveness; facilita-tive skills in interpersonal and group settings; and, a willingness to produce knowl-edge to empower a group of people, and to work authentically in collaboration withpeople to improve their lives (Liamputtong 2010, 2013). The research should bedesigned to coproduce culturally respectful, relevant, and empowering knowledge(Castleden et al. 2012). Healthcare training programs designed to produceresearchers that can work in an Indigenous context should have content related tohow structures of power rooted in colonialism continue to create health inequitiesand how an individual’s own experiences of privilege and oppression affect theirpractice (Beavis et al. 2015). The acceptance by the professoriate of research thatuses Indigenous methodologies to produce transformative change may require a“decolonizing” of the academy (Robertson 2016; see “Indigenist and DecolonizingResearch Methodology”).

There are numerous examples of programs and workshops designed to buildcapacity among Indigenous peoples to conduct research or to partner with outsidersto conduct research. For the sake of brevity, below I provide some examples ofCanadian and American programs that seek to improve the ability of healthresearchers to work with Indigenous peoples or in Indigenous communities, or thataim to educate Indigenous peoples about research topics. Some of the programs offertravel scholarships or tuition waivers to Indigenous applicants.

8.1 Institute on the Ethics of Research with Indigenous Peoples

Carleton University in Canada launched the Institute on the Ethics of Research withIndigenous Peoples (CUIERIP) in June of 2015 (https://carleton.ca/aboriginal/).CUIERIP is a week-long summer institute to equip Indigenous andnon-Indigenous researchers with tools to implement ethical practices when workingwith First Nations, Inuit and Métis communities, or conducting research on tradi-tional Indigenous territory. Its scheduling coincides with the spring term session ofcourses for Carleton’s Masters degree concentration in Indigenous Policy andAdministration. CUIERIP is intended for a diverse audience, including academicresearchers, research ethics board members, graduate students, First Nations, Inuitand Métis community members, and researchers and representatives from govern-mental and nongovernmental organizations. Participants learn in a collaborativeenvironment and are led by Carleton faculty, research ethics professionals, andIndigenous and non-Indigenous community-based researchers with expertise in

16 N.D. Willows

research ethics, community engagement, and research design and review. Partici-pants work together in small groups using case studies to work through the ethicalissues involved in community engagement plans and research agreements.

8.2 Centre for Excellence in Indigenous Health

The Centre for Excellence in Indigenous Health in the Faculty of Medicine at theUniversity of British Columbia in Canada exists to support and develop Aboriginalhealth programs, curriculum, research, and advocacy with Aboriginal communitiesand partners on local, national, and international levels (http://health.aboriginal.ubc.ca/education/). It offers an undergraduate course called Topics in Indigenous Health:A Community-Based Experience (http://health.aboriginal.ubc.ca/education/ihhs-408/). This 4-week practice-based Indigenous health elective has health sciencesstudents live and work with students from other health disciplines within an Indig-enous community in the Province of British Columbia. The course objectives seek tofoster increased awareness of the core principles required to do community-basedparticipatory research with Indigenous communities such as gaining an understand-ing of and respect for Indigenous perspectives on health and wellbeing; understand-ing, acknowledging, and exploring the implications of specific processes ofcolonization and related social policies for the health of Indigenous peoples; exam-ining and identifying patterns of health and illness from multiple perspectives:epidemiology, interdisciplinary health, community, and Indigenous knowledge;and, demonstrating respectful communication with Indigenous peoples.

8.3 Community-Based Research and Evaluation CertificateProgram

The UAlberta in Canada offers the embedded graduate Community-Based Researchand Evaluation (CBRE) Certificate Program (https://www.extension.ualberta.ca/study/community-engagement-studies/cbre/). It is designed for graduate studentswho seek to develop their capacity to participate in and lead community-basedresearch and evaluation. Though not specifically designed to train students to doresearch and evaluation in Indigenous communities, students can choose to partnerwith an Indigenous community and Indigenous community mentor if they areinterested in CBRE in Indigenous contexts.

All students in the certificate program must take a graduate level course called AnIntroduction to CBPR. This course has historically included some guest lectures byresearchers working in Indigenous communities or Indigenous community membersparticipating in CBPR with academic researchers. In consultation with a CBREAdvisor and their graduate supervisor, students are additionally required to takegraduate level-courses in program planning and evaluation; quantitative researchmethods; and qualitative research methods. Through coursework, students developan understanding of CBRE concepts, program planning and evaluation, and a variety

Ethics and Research with Indigenous Peoples 17

of quantitative, qualitative, and/or mixed methods. The program has a mandatoryexperiential component in a community setting to apply the concepts and methodslearned through their course work including relationship building and maintenance;political sensitivity; development of a partnership agreement; participation in day-to-day, project-management duties; participation in partnership decision-making; par-ticipation in the development of a specific project within a partnership; and, devel-opment and/or implementation of a process evaluation of the partnership. ACommunity Mentor and the CBRE program Experiential Learning Coordinatorjointly supervise the CBRE community experience which is a minimum of 156 h.

8.4 Master of Public Health: Native Hawaiian and IndigenousHealth Specialization

In an effort to address the disparities faced by Native Hawaiians and other Indige-nous Peoples, the University of Hawai‘i, Office of Public Health Studies, has aspecialization in Native Hawaiian and Indigenous Health within the Master of PublicHealth degree. Both of the professors in the Native Hawaiian and Indigenous Healthspecialization are Indigenous scholars. This specialization is designed to preparestudents with the public heath skills and training necessary to serve IndigenousPeople globally and assist in addressing their health and wellness needs by contex-tualizing health determinants within historical and political frameworks. It providesextensive training in culturally sensitive research ethics which is critical for safelyand effectively implementing public health research and programs aimed to addressand eliminate the inequities faced by Indigenous People. Students enrolled in thespecialization are required to take advanced level training in Indigenous healthpolicy, ethics, and research design. The curriculum integrates Indigenous PublicHealth Competencies with traditional competencies to help build a stronger, moreeffective public health workforce in Native Hawaiian and Indigenous communities(Taualii et al. 2013). Students participate in ongoing research and practice programswith Indigenous communities through a practicum assignment (http://manoa.hawaii.edu/publichealth/specializations/native-hawaiian-and-indigenous-health).

8.5 Community Mobilization for Healthy Lifestyles and DiabetesPrevention Training Program

The Kahnawake Schools Diabetes Prevention Project (KSDPP) is one of the longest-running community-based health research projects in Canada. It has been in opera-tion since 1994. It occurs in the Kanien’kehàka (Mohawk First Nations) communityof Kahnawake. The community offers a KSDPP Training Program in DiabetesPrevention to enable and empower participants to begin or enhance a diabetesprevention or wellness program in their community based on the experiences ofthe KSDPP (http://www.ksdpp.org/elder/training_program.php). The CommunityMobilization for Healthy Lifestyles & Diabetes Prevention Training Program shares

18 N.D. Willows

the successful experiences of the health promotion model of KSDPP with Indige-nous community organizations and individuals working with Indigenous communi-ties (http://www.ksdpp.org/media/brochure.pdf). These multiday workshops provideinformation, facilitate discussion, and engage participants to plan community actionsfor healthy lifestyles and diabetes prevention. The program provides participantswith skills that will help them to do research in their own communities or negotiateCBPR by providing them with an understanding of the theoretical background forsuccessful healthy lifestyles programming; identifying community values in relationto healthy lifestyles and diabetes prevention; the importance of teamwork; how tobuild a Community Advisory Board (CAB), identify potential CAB members, andthe nature and activities of CAB volunteers; conducting an environmental scan toidentify key goals, objectives, and strategies for the planning and successful imple-mentation of healthy lifestyles and diabetes prevention planning; different types ofcommunity intervention activities, the steps in planning activities, the developmentof community activity calendars, and activity evaluation; and, developing a dissem-ination program to promote healthy lifestyles and diabetes prevention.

8.6 Summer Research Training Institute for American Indianand Alaska Native Health Professionals

The 2016 Summer Research Training Institute for American Indian and AlaskaNative Health Professionals in the United States was hosted by the NorthwestPortland Area Indian Health Board and the Center for Healthy Communities atOregon Health & Science University (http://www.npaihb.org/images/training_docs/NARCH/2016/2016_SI_Brochure_Final.pdf). The curriculum of this 3-weekcourse was designed to meet the needs of professionals who work in diverse areas ofAmerican Indian and Alaska Native health – from administrators to communityhealth workers, physicians, nurses, researchers, and program managers. It empha-sizes research skills, program design, and implementation.

9 Conclusion and Future Directions

This chapter discussed how States, academic institutions, and Indigenous groups cansupport ethical research with Indigenous peoples, communities, and nations locatedin Australia, Canada, New Zealand, and the United States. It also discusses why theyshould do so. Ideally, ethically conducted research would be decolonizing researchthat leads to self-determination. It would empower Indigenous people through theprocess of constructing and using their own knowledge.

Unfortunately, there is reluctance on the part of some academic researchers andIndigenous communities to coparticipate in health research. Indigenous peoples maybelieve that they will not benefit from the research, or worse, that they will come toharm by participating in health research. Both Indigenous community members andhealth researchers perceive barriers to doing ethical research. This hesitancy to

Ethics and Research with Indigenous Peoples 19

engage in research means that the research that is needed in Indigenous communitiesfor improved health and well-being is not always being done, or is not being donewell. To help ensure that beneficial research occurs, community members need to beprovided with workshops and training sessions that will teach them how to negotiatewith health researchers from outside of their communities, let them know their rightsas research participants, and build their skills to conduct their own research or toengage in CBPR with outsiders. Research undertaken by non-Indigenous researcherscan lead to improvements in the health status of Indigenous people provided thatresearchers have appropriate ethical guidelines to follow and training opportunitiesthat offer guidance on Indigenous ways of knowing, the SDoH, strength-basedresearch approaches, CBPR, and how to engage in culturally appropriate wayswith Indigenous peoples. Researchers wanting to pursue a specialization in Indige-nous health research need support from academic leadership and funding agencies tobe successful in their endeavor.

Although conducting ethical research in Indigenous communities offers chal-lenges to both academic and community partners, there are many community,academic, and personal rewards and benefits to adhering to the additional ethicalstandards and research procedures required to do research well in an Indigenouscontext. I suggest more understanding of the following research areas and topics tobroaden the support for engaged scholarship between researchers and communitymembers undertaking ethical research related to Indigenous health.

• Richly detailed case studies that demonstrate how and why ethical research withIndigenous peoples increases both individual and community-level self-determi-nation, and consequently, increases Indigenous peoples’ perceived control overhealth.

• Examples of how to best support Indigenous health research that championsdemocratic empowerment, whereby communities and community membersassess their own interests and make decisions on how to see these interests putinto action.

• Research to discover if the acquisition of new skills and knowledge by Indige-nous community members in relation to conducting health research, or partici-pating in health research, results in the ability of members to positively influencecommunity change.

• The development of research models that incorporate an understanding of howIndigenous communities can combine the diverse types of research knowledge(e.g., biomedical) emanating from community-based participatory research withthe practical and cultural knowledge of community members to create positivehealth outcomes, by influencing the social determinants of health, the socialpolicy process, and important policy issues (Bryant et al. 2007).

• Examples of how academics can be supported both financially and institutionallyto conduct ethical health research with Indigenous peoples and communities thatemphasizes social change and positive health outcomes as an endpoint.

• Descriptions from health researchers of how they have benefited professionallyand personally from undertaking ethical research in Indigenous communities.

20 N.D. Willows

• Descriptions from Indigenous community members of how they have benefitedfrom undertaking ethical research with health researchers.

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