Guidelines for Ethical Aboriginal Research: A Community based Aboriginal Ethics Review ProcessA Presentation By: Niki NaponseManitoulin Anishinabek Research Review Committee Noojmowin Teg Health Centre

**Guidelines for Ethical Aboriginal Research, Manitoulin Island AreaManitoulin Island: large freshwater island in Northern Ontario, Canada and is 2766 square kilometres. Manitoulin has an approximate population of 12,000 people and 4,700 are Aboriginal. There are 7 First Nation communities made up of the Ojibway, Odawa and Pottawatomi nations. These nations are part of a social, cultural, spiritual and political alliance known as the Three Fires Confederacy.

**Aboriginal peoples and researchFirst Nation communities are often contacted by academic researchers to participate in health research projectsMany First Nations conduct their own research to gather reliable data to support community-based initiativesMany First Nations communities today face high rates of chronic illnesses, particularly diabetes, heart disease and obesityHealth services are now being delivered by First Nation communities who need data on health status and program effectiveness

**Concerns about research in First Nation communitiesNumerous research activities cause community members to experience research fatigueResearch results not shared with the participating First Nation communities.Research did not lead to any changes or actions and has not led to improved community healthThe ethical conduct of some researchers has been questionable.

**BackgroundProactive Approach to ResearchA community-based health research conference was held on Manitoulin Island in March 2001.Brought together health care professionals, community members, Elders as well as local and university-based researchersParticipants created a vision for ethical health research on Manitoulin. A working committee was formed to make that vision into a reality and the Guidelines for Ethical Aboriginal Research (GEAR) were developed.

**Community Concerns about Research in local First Nations

Research activities often causes community members to feel that they have been researched to death, without benefit to their community resulting in research fatigueGenerally, research has not lead to improved community healthThe ethical conduct of some researchers has been questionable (from a First Nations perspective).

**Our Vision for Culturally Appropriate ResearchTo contribute to community empowerment through research and to ensure proposed research projects focus on ethical and respectful partnerships with Aboriginal communities within the Manitoulin Island District.

Development ProcessSummer and fall of 2001 working group sought support for the development of ethical research guidelines from 4 health boards and the tribal council

In 2002, discussion groups were held with community members who were knowledgeable in local Aboriginal culture and community health issues

In 2003/2004 draft guidelines were presented to the health boards and the 7 band councils for approval.

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**Guiding Values for GEAR:Research designed to directly benefit the community and produce documents which are useful for communities and agencies

Respect the Aboriginal ethics, diversity between communities, and Traditional Aboriginal Knowledge and Culture

Respect and build local capacity for research and evaluation

Respect the diversity between and within First Nations communities .

**Guiding Values for GEAR:Research must be done in collaboration with the community and should have the guidance of a local steering committee.

Research methodologies must be culturally acceptable at the community level.

OCAP Ownership, Control, Access and Possession: Respect that the collected data, results and publications are owned by local communities and/or agencies (or joint ownership).

Respect Traditional Aboriginal knowledge, culture an intellectual property and incorporate traditional values into the research approach.

**Aboriginal Ethical Research GuidelinesThe Aboriginal Ethical Guidelines were developed in collaboration with an Elders GroupBased on seven grandfather teachings:Respect, Bravery, Truth, Humility, Honesty, Love and Wisdom

**Aboriginal Ethical Research GuidelinesSome quotes of what people said:Respect the diversity in spirituality, beliefs and values of First Nation people within each of their communities.Researchers have to become aware of wisdom of elders and children.Be aware that meaning of off-beat remarks by research participants are easily misinterpreted. The same can also be true for humor in general. Make an effort to appreciate peoples humor!Research should ask themselves:How will the research benefit the community?How will it benefit future generations?Are participants and the community approached in a respectful way?Is the information obtained in a kind and respectful manner?

**Guidelines for Ethical Aboriginal Research (GEAR)GEAR components:Our Vision for Culturally appropriate Aboriginal Research on ManitoulinAboriginal Ethical Guidelines for researchEthical guidelines: Tri-Council Policy Statement Canadian Institute for Health Research (CIHR)Social Science and Humanities Research council (SSHRC)National Sciences and Engineering Research Council for Canada (NSERC)Ethics and Research Review process Background information on the research committee Sample forms and contractsReferences

**Manitoulin Anishinabek Research Review Committee (MARRC)The main function of the committee was to develop the Guidelines for Ethical Aboriginal Research; to evaluate research proposals; and build capacity for ethical Aboriginal research in the Manitoulin area.

**GEARReview process for research projects :

Medicine wheel

NORTH

Eastern Doorway Birth of Project/IdeaWestern Doorway

Completion of Project

JourneyResearch Project is in placeSOUTHManitoulin Anishinabek Research ReviewCommittee Ethics ReviewCommunity/OrganizationApplicant/ Researcher

The East represents the birth of a research project which is shared with the Community / Organization Referred to Manitoulin Anishinabek Research Review Committee for Ethics Review Research Applicant either receives approval or receives recommendations for changes to enhance the project The project begins its journey from the Eastern to the Western Doorway (signifying the project from beginning to end)

**What are the pros and cons of a centralized vs. local committee?Local Committee:ProsCommittee members are knowledgeable about communitys politics, culture, language, beliefs and valuesCommunity representation on committee allows for local inputBuilds capacity in the communitiesCommunities decide what type of research is appropriate and will benefit the communityMore likely to represent the views of the communityLocal process can be very helpful to connect with the community peopleOpportunities for collaborative research

**What are the pros and cons of a centralized vs. local committee?Local Committee:ConsCan be time consuming for committee membersNot a big pool of people to draw on for membershipEveryone knows everyone so there is potential for real or perceived conflicts of interest. Need financial and administrative support to functionNeed to maintain independence yet remain linked to the community Who is the community who represents them?Committee views may be in conflict with community vies need a process to resolve differences

**What are the pros and cons of a centralized vs. local committee?Centralized REB:PROSA centralized REB is more generic and more standardized which makes it more predictable (know what will go through and what ill not from a researchers perspectiveDetached from the community which can be a positive and a negative aspect

**Where are we now?MARRC members have made 19 presentations to various organizations and conferences.

MARRC has reviewed 14 research proposals since August 2005

Terms of Reference and Work Book have recently been revised. A Strategic Planning session was held in July 2009 and a consultation with Elders was held in August 2009.

Planning a research conference for 2011 to celebrate 10 years

**Manitoulin Anishinabek Research Review Committee Committee Members:Lorrilee McGregor, M.A. Research Director, Community-Based Research,Lenore Mayers, Administrative Program Support , Noojmowin Teg Health CentreMarjory Shawande, Traditional Coordinator, Noojmowin Teg Health CentreCheri Corbiere, Sheshegwaning First NationSteven Fox-Radulovich, IT ConsultantSusan Manitowabi, Professor/Coordinator, Native Human Services, Laurentian UniversityNiki Naponse, Executive Director, Za-geh-do-win Information ClearinghousePhyllis Kinoshameg, Consultant, Wikwemikong Resource Members:Joyce Helmer, Chair, Wabnode Institute, Cambrian College

For more information, please contact Lenore Mayers at 706-368-2182 or email at lenore.mayers@noojmowin-teg.caOr visit our website at www.noojmowin-teg.ca

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*The research design did not focused on collaboration, community action and did not contribute to community empowerment. The validity of results and the interpretation are often questioned at the community level. There is no doubt, gross errors have been made in cross cultural research.Ethical Conduct has been questioned:Residential school projectChart auditArthritis Research blood samples***In addition to general values for research, ethical guidelines were developed as well

Aboriginal research ethics for Manitoulin developed through collaboration with an Elders GroupBased on seven grandfather teachings:Respect, Bravery, Truth, Humility, HonestyLove and Wisdom

*Respect, Bravery, Truth, Humility, Honesty, Love and Wisdom

Some examples of how elders felt the teachings can be interpreted with respect to research and evaluation:Respect the diversity in spirituality, beliefs and values of First Nation people within each of their communities Researchers have to become aware of wisdom of elders and childrenBe aware that meaning of off-beat remarks by research participants are easily misinterpreted. The same can also be true for humor in general. Make an effort to appreciate peoples humor!Sharing and generosity in research means to keep in mind the following concepts:How will the research benefit the community?How will it benefit future generations? Are the arms reaching out for the future, just like ancestors arms have done?Is the obtained information shared in a way that will benefit the future 7th generation. Does it reflect our love for the future generation and their survival?Within the history of communities, trust has been broken many times. As a result one often encounters reluctance towards research. The researcher needs to work towards a trust based relationship with the community and the individuals and families who participate in research. To do this, you may have to visit more often, then just once to do a survey. Particularly with elders, gather the information bit by bit. It may not be appropriate to write things down continuously or tape record. This may be different for the younger generation. Again it is important that the researcher is aware of the diversity in the community. Approach Elders with tobacco to build a relationship when appropriate. Ask yourself: Were people happy that you have come to them? Researchers should try to get rid of any preconceived expectations. Preconceptions will show! For example if interviews are done in the home of people, dont be judgmental of peoples homes. Rather show humility in another persons home and conduct yourself without making assumptions about a person.Do not be intrusive with questions, there are ways of approaching subjects in a non-threatening way.

***The Ethics Review Committee consists of a Chairperson and 2 -3 membersDecision making is by consensus. If consensus cannot be reached then options will be tabled and members shall vote on the issue. *****