Research Ethics Protocols & Guidelines

Researchers, government and others have often heard from First Nations that “we have been researched to death.” First Nations communities also often express concern over the way research is conducted in their communities and territories, including:

• Lack of respect for First Nations’ protocol and cultural practices;
• Research projects that are not planned with full community input and direction;
• Lack of reporting back to the community on research results;
• No follow through on results – what happens next? How will the research help address problems communities are facing?

While each First Nations community is unique, there are common experiences, lessons learned and tools that can be shared among communities to help build ‘cultures of research’. Through the development of community-based research protocols, guidelines, research review committees, and other means, communities can drive their own research agenda.

We are providing these examples of different protocols, codes of ethics, and guidelines for information purposes for First Nations communities and those researchers who may want to work with First Nations. We are not recommending any one approach over another, but rather to provide a broad range of examples so that communities may have more to work with in developing their own research protocols, codes of ethics, and guidelines.

If you have any questions about research protocols, ethics and guidelines please call us toll free at 1-866-869-6789 extension 294.

Research Protocols Developed by First Nations/Indigenous Communities

ORGANIZATION: Aboriginal Health Research Review Committee in collaboration with Manitoulin First Nations leadership and community agencies

GUIDELINE: Guidelines for Ethical Aboriginal Research (GEAR)

DESCRIPTION:

Guidelines_for_Ethical_Aboriginal_Research.pdf
Ethics_Review_Workbook_2011.pdf

The workbook accompanies the Guidelines for Ethical Aboriginal Research (GEAR) developed between1999-2003. The purpose of the workbook is to provide the Manitoulin Anishinaabek Research Review Committee (MARRC) and local First Nation communities with a tool to assist in the assessment of research proposals. The guidelines were initially developed to address health research issues, however as recommended by local communities, the MARRC broadened the scope of research review to develop guidelines and tools that apply to research from any discipline.

ORGANIZATION: Nuu-Chah-Nulth Tribal Council Research Ethics Committee

GUIDELINE: Protocols and Principles for Conducting Research in a Nuu-Chah-Nulth Context

DESCRIPTION:

This protocol has been developed to assist researchers in ensuring that they meet the appropriate protocols of the Nuu-chah-nulth communities when conducting research in their territories, as well as providing a mechanism of ensuring that research that is conducted within Nuu-chah-nulth communities is done in an ethical and appropriate manner.

ORGANIZATION: Indigenous Peoples Council on Biocolonialism

GUIDELINE: Indigenous Research Protection Act (Template)

DESCRIPTION:

A Model Tribal Ordinance for the Protection of Indigenous Knowledge and Biological Resources.

ORGANIZATION: Unama'ki College of Cape Breton University

GUIDELINE: Research Principles and Protocols - Mi’kmaw Ethics Watch

DESCRIPTION:

Mikmaw_Research_Principles.pdf

At Chapel Island on July 25, 1999, the Sante’ Mawio’mi established a committee to study and develop principles and guidelines to protect Mi’kmaq peoples and their knowledge.  The committee studied the issues involved in research among Indigenous peoples, and developed a set of standards so that Mi’kmaw people might be informed of research – its benefits and costs, be treated fairly and ethically in their participation in any research, and have an opportunity to benefit and gain from any research conducted among them.  These principles and guidelines are now being disseminated broadly to each of the Mi’kmaw communities for their review, discussion, and ratification.

ORGANIZATION: The Six Nations Council

GUIDELINE: Six Nations Council Ethics Committee Protocol

DESCRIPTION:

SixNationsResearchEthicsProtocol.pdf

The Six Nations Council Ethics Committee Protocol is a 17 page document created to collect detailed information from researchers on the terms of proposed research projects; this document also clearly states the protocols and expectations set forth by the Six Nations Council Ethics Committee.

ORGANIZATION: The Inter Tribal Health Authority

GUIDELINE: Inter Tribal Health Authority Protocol: Working Together for Healthy Nations

DESCRIPTION:

The Inter Tribal Health Authority (ITHA), Founded in 1996, is comprised of 28 First Nations Members. The Inter Tribal Health Authority Protocol was created to ensure that universities and independent researchers building partnerships with the ITHA would undertake research of benefit to First Nations communities, and would be well-designed and First Nations controlled. This document was also created to build greater research capacity within First Nations communities.

ORGANIZATION: Akwesasne Task Force on the Environment

GUIDELINE: Akwesasne Good Mind Research Protocol

DESCRIPTION:

The goal of the Akwesasne Good Mind Protocol is sharing of respect, equity and empowerment. A primary aim of our research protocols is the development of good working relationships between the community and the researcher. This is accomplished by the criteria set forth by the ATFE Research Advisory Committee.

Protocols Developed Through Community-University and Community-Government Partnerships

ORGANIZATION: The Kahnawak’ke Schools Diabetes Prevention Project

GUIDELINE: Code of Research Ethics

DESCRIPTION:

ksdpp_code_of_research_ethics2007.pdf

Kahnawak’ke, Quebec:  The Kahnawa’ke Schools Diabetes Prevention Project   2007
The Kahnawa’ke Schools Diabetes Prevention Project (KSDPP) is a partnership between the Kahnawa:ke Mohawk community and various researchers affiliated with KSDPP. The KSDPP developed a Code of Research Ethics to guide diabetes prevention projects and research activities in Kahnawak’ke schools. This Code is specific to the work of the KSDDP, however it is useful guide for subsequent long term project-specific protocol developments.

National, Provincial, or Regional Resources

ORGANIZATION: Community-Based Research Canada

GUIDELINE: Community Based Research Booklet Series

DESCRIPTION:

What is Community Based Research (CBR) ?
CBR and Partnerships
Creative Methods in CBR
Why CBR Matters

ORGANIZATION: Saskatoon Aboriginal Women’s Health Research Institute and the Prairie Women’s Health Centre of Excellence

GUIDELINE: Ethical Guidelines for Aboriginal Women’s Health Research

DESCRIPTION:

Ethical_Guidelines_for_Aboriginal_Womens_Health_Research.pdf

These ethical guidelines for Aboriginal women’s health research were developed by the Saskatoon Aboriginal Women’s Health Research Committee with support from Prairie Women’s Health Centre of Excellence. The guidelines have been adapted from the Royal Commission on Aboriginal Peoples – Ethical Guidelines for Research (1993)1 and Ethical Guidelines for WUNSKA Research. WUNSKA is a Cree word meaning, “To wake up”; these guidelines were developed by a group of social workers in the early 1990s, in order to facilitate research by and for Aboriginal people.

ORGANIZATION: University of Victoria, Faculty of Human and Social Development

GUIDELINE: Protocols & Principles For Conducting Research in an Indigenous Context

DESCRIPTION:

February 2003. (final revision)


This protocol has been developed to help ensure that, in all research sponsored by the Faculty of Human and Social Development on or involving Indigenous peoples, appropriate respect is given to the cultures, languages, knowledge and values of Indigenous peoples, and to the standards used by Indigenous peoples to legitimate knowledge. Such research could include populations containing Indigenous members, research involving Indigenous people as respondents or co-researcher research involving any aspect of Indigenous intellectual property.

ORGANIZATION: Association of Canadian Universities for Northern Studies (ACUNS)

GUIDELINE: Ethical Principles for the Conduct of Research in the North

DESCRIPTION:

Revised document approved by ACUNS Council, 28 November 1997. The 20 principles presented here are intended to encourage the development of co-operation and mutual respect between researchers and the people of the North. They are also intended to encourage partnership between northern peoples and researchers that, in turn, will promote and enhance northern scholarship.

ORGANIZATION: University of British Columbia, Institute for Aboriginal Health Research

GUIDELINE: Aboriginal Community Code of Research Ethics Template

DESCRIPTION:

This report provides guidelines for responsible research with First Nations, developed by the University of British Columbia in conjunction with The Institute for Aboriginal Health, and the BC Aboriginal Capacity and Developmental Research Environments. These guidelines suggest responsible procedures for developing ongoing communication with communities, respecting First Nations Knowledge, and clarifying researcher and community expectations and responsibilities.

ORGANIZATION: Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada

GUIDELINE: Research Involving Aboriginal Peoples, Tri-Council Policy Statement. 2010

DESCRIPTION:

Ethical_Conduct_for_Research_Involving_Humans.pdf

This Policy contains both guidance for the interpretation of the principles of research ethics, as well as a number of mandatory requirements for researchers, institutions and members

Chapter 9 deals with RESEARCH INVOLVING THE FIRST NATIONS, INUIT AND MÉTIS PEOPLES OF CANADA

ORGANIZATION: Canadian Institutes of Health Research

GUIDELINE: CIHR Guidelines for Health Research Involving Aboriginal People

DESCRIPTION:

The Canadian Institutes of Health Research, http://www.cihr-irsc.gc.ca/, funding agency for Health Canada, has established guidelines for ethical research in four primary areas of health care: biomedical, clinical, systems and services; and social, cultural and environmental population health.

ORGANIZATION: National Aboriginal Health Organization (NAHO)

GUIDELINE: Ethics Tool Kit, Ethics in Health Research, 2003

DESCRIPTION:

This tool kit provides an overview of research ethics for First Nations communities. It is meant to do two things: First, to help communities that are planning to do their own research by describing ethical issues they may need to think about. Second, to help communities that are engaged in research with outside organizations to understand what aspects of research ethics they may need to negotiate with the outside organization.

ORGANIZATION: National Aboriginal Health Organization (NAHO)

GUIDELINE: Considerations and Templates for Ethical Research Practices

DESCRIPTION:

The First Nations Centre at NAHO has developed this as a companion document to the first Ethics Tool Kit (2003) that focused on the emerging issues surrounding ethical research practices in First Nations. It is hoped that this guide will create an increased awareness among the non-First Nations research community that endeavours to engage in research with First Nations.

ORGANIZATION: National Aboriginal Health Organization (NAHO)

GUIDELINE: First Nations Ownership, Control, Access and Possession (OCAP)

DESCRIPTION:

First Nations need to protect all information concerning themselves, their traditional knowledge and culture, including information resulting from research. The principles of Ownership, Control, Access and Possession (OCAP) enable self-determination over all research concerning First Nations.

Further Reading: Articles and Reports on Research Ethics

ORGANIZATION: National Aboriginal Health Organization (NAHO)

GUIDELINE: Interviewing Elders Guidelines

DESCRIPTION:

Reporters wishing to cover events involving Elders’ teachings need to be aware of some simple protocols for approaching Elders and determining how information can be used in news articles, voice clips, or photos/video.
Interviewing_Elders_Guidelines.doc

ORGANIZATION: Ann C Macaulay, Laura E Commanda, William L Freeman, Nancy Gibson, Melvina L McCabe, Carolyn M Robbins, Peter L Twohig, for the North American Primary Care Research Group

GUIDELINE: Participatory Research Maximises Community and Lay Involvement

DESCRIPTION:

Participatory research attempts to negotiate a balance between developing valid generalisable knowledge and benefiting the community that is being researched and to improve research protocols by incorporating the knowledge and expertise of community members. For many types of research in specific communities, these goals can best be met by the community and researcher collaborating in the research as equals.

ORGANIZATION: Nancy Atkinson, et al.

GUIDELINE: Guidelines for Participatory Research in Health

DESCRIPTION:

Presented are guidelines intended for use by grant application reviewers to appraise whether proposals for funding as participatory research meet participatory research criteria. These guidelines can also be used as a checklist by academic and community researchers in planning their projects. As presented, the instrument employs what may be considered a generic set of guidelines that define participatory research. These guidelines represent a systematic attempt to make explicit and thus observable and possibly measurable the principles and defining characteristics of participatory research, from the perspective of health promotion. By objectifying these principles and characteristics, the guidelines will not find uniform favor with all those who advocate a more unstructured form of participatory research. Nevertheless, if participatory research is to be funded as research, it is necessary (for reasons discussed earlier) to make as explicit as possible the essential components of the process.

ORGANIZATION: Marlene Brant Castellano, January 2004

GUIDELINE: journal_p98-114.pdf

DESCRIPTION:

Ethics of Aboriginal Research
journal_p98-114.pdf

Published in the National Aboriginal Health Organization Journal of Aboriginal Health, this paper proposes a set of principles to assist in developing ethical codes for the conduct of research within the Aboriginal community or with external partners. It places the discussion of research ethics in the context of cultural world view and the struggle for self-determination as peoples and nations. It affirms that Aboriginal Peoples have a right to participate as principals or partners in research that generates knowledge affecting their culture, identity and well-being.

ORGANIZATION: Centres of Excellence for Women’s Health

GUIDELINE: A Gathering for First Nations and Métis Women’s Health in Northern Manitoba

DESCRIPTION:

This report details a meeting that took place in 2005 in Northern Manitoba. First Nations and Métis women involved with community health research and came together to discuss issues and priorities in health research. The report details these issues, including guidelines for developing community-specific research protocols.

ORGANIZATION: Indigenous Health Research Development Program

GUIDELINE: Ganono’se’n e yo’gwilode’: Ethical Guidelines for Aboriginal Research Elders and Healers Rou

DESCRIPTION:

Ohsweken, Ontario: Six Nations Polytechnic   2005


This report details a round table discussion between Six Nations Elders and Healers, and researchers with substantial interest in developing First Nations research capacity from The Six Nations Polytechnic, the Indigenous Studies Programme, and McMaster’s University. The report details the suggestions and concerns raised by Elders and traditional healers with regards to research undertakings and researcher-community partnerships.

Literature Reviews, Bibliographies and Other Links Series

ORGANIZATION: Willie Ermine, M.Ed, Raven Sinclair, PhD Candidate, Madisun Browne, LLB Indigenous Peoples’ Health Research Centre, Saskatoon, SK

GUIDELINE: Kwayask itôtamowin: Indigenous Research Ethics Report of the Indigenous Peoples’ Health Research

DESCRIPTION:

IPHRC_ACADRE_Ethics_Report.pdf

Kwayask itôtamowin: Indigenous Research Ethics Report of the Indigenous Peoples’ Health Research Centre to the Institute of Aboriginal Peoples’ Health and the Canadian Institutes of Health Research


The literature review summary highlights the findings and recommendations from the recently released The Ethics of Research with Indigenous Peoples authored by IPHRC. The legal review is intended to explore potential and emerging legal issues that arise as a result of the assertion of Indigenous ethics and culturally relevant and ethical research practices and procedures at the national, regional, academic, and local community levels. We engaged in this project in order to ensure that the voice of our communities informs the revision process and, ultimately, to ensure that Aboriginal health research, as it unfolds in the future, does not perpetuate harm, suspicion, and further mistrust for our communities. Rather, we seek to support the development of paradigms that intrinsically protects the Indigenous knowledge and the aspirations of our communities.

ORGANIZATION: Community Connections University

GUIDELINE: Links and Resources for Community-University Collaborations

DESCRIPTION:

The Community-University Connection (CUC) was created to promote community-based research practices, inclusive of Indigenous Knowledge and in support of First Nations environmental stewardship. The CUC web site lists links to numerous documents describing procedures for developing protocols, with situation-specific examples and descriptions of protocol use in research projects. 

ORGANIZATION: McMaster University

GUIDELINE: Useful Research Ethics Links & Resources Canadian Research Ethics

DESCRIPTION:

This is a page of links to Canadian, International, and First Nations and Indigenous Research Ethics Protocols, made available through McMaster University.

ORGANIZATION: Janice Linton, Aboriginal Health Librarian, University of Manitoba

GUIDELINE: Aboriginal Health - Research Ethics

DESCRIPTION:

A short bibliography of resources on Aboriginal Health and Research Ethics, with links to articles and publications.