Guidelines for Ethical Aboriginal Research:

A Community –based Aboriginal Ethics Review Process

A Presentation By: Niki Naponse

Manitoulin Anishinabek Research Review Committee Noojmowin Teg Health Centre

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Guidelines for Ethical Aboriginal Guidelines for Ethical Aboriginal Research, Manitoulin Island AreaResearch, Manitoulin Island Area

Manitoulin Island: large freshwater Manitoulin Island: large freshwater island in Northern Ontario, Canada and island in Northern Ontario, Canada and is 2766 square kilometres. is 2766 square kilometres. Manitoulin has an approximate Manitoulin has an approximate population of 12,000 people and 4,700 population of 12,000 people and 4,700 are Aboriginal. are Aboriginal.

There are 7 First Nation There are 7 First Nation communities made up of the communities made up of the Ojibway, Odawa and Pottawatomi Ojibway, Odawa and Pottawatomi nations. These nations are part of nations. These nations are part of a social, cultural, spiritual and a social, cultural, spiritual and political alliance known as the political alliance known as the Three Fires Confederacy. Three Fires Confederacy.

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Aboriginal peoples and researchAboriginal peoples and research First Nation communities are often contacted by First Nation communities are often contacted by

academic researchers to participate in health research academic researchers to participate in health research projectsprojects

Many First Nations conduct their own research to gather Many First Nations conduct their own research to gather reliable data to support community-based initiativesreliable data to support community-based initiatives

Many First Nations communities today face high rates of Many First Nations communities today face high rates of chronic illnesses, particularly diabetes, heart disease chronic illnesses, particularly diabetes, heart disease and obesityand obesity

Health services are now being delivered by First Nation Health services are now being delivered by First Nation communities who need data on health status and communities who need data on health status and program effectivenessprogram effectiveness

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Concerns about research in Concerns about research in First Nation communitiesFirst Nation communities

Numerous research activities cause community Numerous research activities cause community members to experience ‘research fatigue’members to experience ‘research fatigue’

Research results not shared with the Research results not shared with the participating First Nation communities.participating First Nation communities.

Research did not lead to any changes or actions Research did not lead to any changes or actions and has not led to improved community healthand has not led to improved community health

The ethical conduct of some researchers has The ethical conduct of some researchers has been questionable. been questionable.

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BackgroundBackground

Proactive Approach to ResearchProactive Approach to Research A community-based health research conference A community-based health research conference

was held on Manitoulin Island in March 2001.was held on Manitoulin Island in March 2001. Brought together health care professionals, Brought together health care professionals,

community members, Elders as well as local and community members, Elders as well as local and university-based researchersuniversity-based researchers

Participants created a vision for ethical health Participants created a vision for ethical health research on Manitoulin. A working committee was research on Manitoulin. A working committee was formed to make that vision into a reality and the formed to make that vision into a reality and the Guidelines for Ethical Aboriginal Research (GEAR) Guidelines for Ethical Aboriginal Research (GEAR) were developed. were developed.

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Community Concerns about Research Community Concerns about Research in local First Nationsin local First Nations

Research activities often causes community Research activities often causes community members to feel that they have been members to feel that they have been “researched to death”, without benefit to their “researched to death”, without benefit to their community resulting in research fatiguecommunity resulting in research fatigue

Generally, research has not lead to improved Generally, research has not lead to improved community healthcommunity health

The ethical conduct of some researchers has The ethical conduct of some researchers has been questionable (from a First Nation’s been questionable (from a First Nation’s perspective). perspective).

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Our Vision for Culturally Our Vision for Culturally Appropriate ResearchAppropriate Research

To contribute to community To contribute to community empowerment through research and to empowerment through research and to ensure proposed research projects ensure proposed research projects focus on ethical and respectful focus on ethical and respectful partnerships with Aboriginal partnerships with Aboriginal communities within the Manitoulin communities within the Manitoulin Island District.Island District.

Development ProcessDevelopment Process Summer and fall of 2001 – working group sought support Summer and fall of 2001 – working group sought support

for the development of ethical research guidelines from 4 for the development of ethical research guidelines from 4 health boards and the tribal councilhealth boards and the tribal council

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

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

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Guiding Values for GEAR:Guiding Values for GEAR: Research designed to directly benefit the community and Research designed to directly benefit the community and

produce documents which are useful for communities produce documents which are useful for communities and agenciesand agencies

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

Respect and build local capacity for research and Respect and build local capacity for research and evaluationevaluation

Respect the diversity between and within First Nations Respect the diversity between and within First Nations communities communities

. .

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Guiding Values for GEAR:Guiding Values for GEAR: Research must be done in collaboration with the Research must be done in collaboration with the

community and should have the guidance of a local community and should have the guidance of a local steering committee. steering committee.

Research methodologies must be culturally acceptable Research methodologies must be culturally acceptable at the community level.at the community level.

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

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

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Aboriginal Ethical Aboriginal Ethical Research GuidelinesResearch Guidelines

The Aboriginal Ethical Guidelines The Aboriginal Ethical Guidelines were were developed in collaboration with an developed in collaboration with an Elders GroupElders Group

Based on seven grandfather teachings:Based on seven grandfather teachings: Respect, Bravery, Truth, Humility, Honesty, Respect, Bravery, Truth, Humility, Honesty,

Love and WisdomLove and Wisdom

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Aboriginal Ethical Aboriginal Ethical Research GuidelinesResearch Guidelines

Some quotes of what people said:Some quotes of what people said: ““Respect the diversity in spirituality, beliefs and values of First Respect the diversity in spirituality, beliefs and values of First

Nation people within each of their communities.”Nation people within each of their communities.” ““Researchers have to become aware of wisdom of elders and Researchers have to become aware of wisdom of elders and

children.”children.” ““Be aware that meaning of off-beat remarks by research Be aware that meaning of off-beat remarks by research

participants are easily misinterpreted. The same can also be participants are easily misinterpreted. The same can also be true for humor in general. Make an effort to appreciate true for humor in general. Make an effort to appreciate peoples humor!”peoples humor!”

Research should ask themselves:Research should ask themselves: How will the research benefit the community?How will the research benefit the community? How will it benefit future generations?How will it benefit future generations? Are participants and the community approached in a Are participants and the community approached in a

respectful way?respectful way? Is the information obtained in a kind and respectful manner?Is the information obtained in a kind and respectful manner?

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Guidelines for Ethical Aboriginal Guidelines for Ethical Aboriginal Research (GEAR)Research (GEAR)

GEAR components:GEAR components: Our Vision for Culturally appropriate Aboriginal Our Vision for Culturally appropriate Aboriginal

Research on ManitoulinResearch on Manitoulin Aboriginal Ethical Guidelines for researchAboriginal Ethical Guidelines for research Ethical guidelines: Tri-Council Policy StatementEthical guidelines: Tri-Council Policy Statement

Canadian Institute for Health Research (CIHR)Canadian Institute for Health Research (CIHR) Social Science and Humanities Research council (SSHRC)Social Science and Humanities Research council (SSHRC) National Sciences and Engineering Research Council for Canada (NSERC)National Sciences and Engineering Research Council for Canada (NSERC)

Ethics and Research Review process Ethics and Research Review process Background information on the research committeeBackground information on the research committee Sample forms and contractsSample forms and contracts ReferencesReferences

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Manitoulin Anishinabek Research Manitoulin Anishinabek Research Review Committee (MARRC)Review Committee (MARRC)

Community Agencies, Chiefs

& Councils,Health Staff and Boards

Traditional People,Elders,

Cultural Advisors

Academic/communityResearchers

The main function of the The main function of the committee was to committee was to develop the Guidelines develop the Guidelines for Ethical Aboriginal for Ethical Aboriginal Research; to evaluate Research; to evaluate research proposals; and research proposals; and build capacity for ethical build capacity for ethical Aboriginal research in the Aboriginal research in the Manitoulin area. Manitoulin area.

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GEARGEARReview process for Review process for research projectsresearch projects ::

Medicine wheelMedicine wheel

NORTH

Eastern Doorway

Birth of Project/Idea

Western Doorway

Completion of Project Journey—Research Project is in place

SOUTH

Manitoulin Anishinabek

Research ReviewCommittee

Ethics Review

Community/Organization

Applicant/ Researcher

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

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What are the pros and cons of a What are the pros and cons of a centralized vs. local committee?centralized vs. local committee?

Local Committee:Local Committee: ProsPros

• Committee members are knowledgeable about community’s Committee members are knowledgeable about community’s politics, culture, language, beliefs and valuespolitics, culture, language, beliefs and values

• Community representation on committee allows for local Community representation on committee allows for local inputinput

• Builds capacity in the communitiesBuilds capacity in the communities• Communities decide what type of research is appropriate Communities decide what type of research is appropriate

and will benefit the communityand will benefit the community• More likely to represent the views of the communityMore likely to represent the views of the community• Local process can be very helpful to connect with the Local process can be very helpful to connect with the

community peoplecommunity people• Opportunities for collaborative research Opportunities for collaborative research

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What are the pros and cons of a What are the pros and cons of a centralized vs. local committee?centralized vs. local committee?

Local Committee:Local Committee: ConsCons

• Can be time consuming for committee membersCan be time consuming for committee members• Not a big pool of people to draw on for membershipNot a big pool of people to draw on for membership• Everyone knows everyone so there is potential for real or Everyone knows everyone so there is potential for real or

perceived conflicts of interest. perceived conflicts of interest. • Need financial and administrative support to functionNeed financial and administrative support to function• Need to maintain independence yet remain linked to the Need to maintain independence yet remain linked to the

community community • Who is the “community” – who represents them?Who is the “community” – who represents them?• Committee views may be in conflict with community vies – Committee views may be in conflict with community vies –

need a process to resolve differencesneed a process to resolve differences

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What are the pros and cons of a What are the pros and cons of a centralized vs. local committee?centralized vs. local committee?

Centralized REB:Centralized REB:PROSPROS A centralized REB is more generic and more A centralized REB is more generic and more

standardized which makes it more predictable standardized which makes it more predictable (know what will go through and what ill not (know what will go through and what ill not from a researcher’s perspectivefrom a researcher’s perspective

Detached from the community which can be a Detached from the community which can be a positive and a negative aspect positive and a negative aspect

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Where are we now?Where are we now? MARRC members have made 19 presentations MARRC members have made 19 presentations

to various organizations and conferences.to various organizations and conferences.

MARRC has reviewed 14 research proposals MARRC has reviewed 14 research proposals since August 2005since August 2005

Terms of Reference and Work Book have Terms of Reference and Work Book have recently been revised. A Strategic Planning recently been revised. A Strategic Planning session was held in July 2009 and a session was held in July 2009 and a consultation with Elders was held in August consultation with Elders was held in August 2009.2009.

Planning a research conference for 2011 to Planning a research conference for 2011 to celebrate 10 yearscelebrate 10 years

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Manitoulin Anishinabek Research Manitoulin Anishinabek Research Review Committee Review Committee

Committee Members:Committee Members: Lorrilee McGregorLorrilee McGregor, M.A. Research Director, Community-Based Research,, M.A. Research Director, Community-Based Research, Lenore MayersLenore Mayers, Administrative Program Support , Noojmowin Teg Health Centre, Administrative Program Support , Noojmowin Teg Health Centre Marjory ShawandeMarjory Shawande, Traditional Coordinator, Noojmowin Teg Health Centre, Traditional Coordinator, Noojmowin Teg Health Centre Cheri CorbiereCheri Corbiere, Sheshegwaning First Nation, Sheshegwaning First Nation Steven Fox-RadulovichSteven Fox-Radulovich, IT Consultant, IT Consultant Susan ManitowabiSusan Manitowabi, Professor/Coordinator, Native Human Services, Laurentian University, Professor/Coordinator, Native Human Services, Laurentian University Niki NaponseNiki Naponse, Executive Director, Za-geh-do-win Information Clearinghouse, Executive Director, Za-geh-do-win Information Clearinghouse Phyllis Kinoshameg, Phyllis Kinoshameg, Consultant, Wikwemikong Consultant, Wikwemikong Resource Members:Resource Members: Joyce HelmerJoyce Helmer, Chair, Wabnode Institute, Cambrian College, Chair, Wabnode Institute, Cambrian College

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

Or visit our website at Or visit our website at www.noojmowin-teg.ca