Guidelines for Ethical Aboriginal Research:

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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 Research,
Manitoulin Island Area

• Manitoulin 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.

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Aboriginal peoples and research

• First Nation communities are often contacted by
  academic researchers to participate in health
  research projects
• Many First Nations conduct their own research to
  gather reliable data to support community-based
  initiatives
• Many First Nations communities today face high
  rates of chronic illnesses, particularly
  diabetes, heart disease and obesity
• Health services are now being delivered by First
  Nation communities who need data on health status
  and program effectiveness

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Concerns about research in First Nation
communities

• Numerous research activities cause community
  members to experience research fatigue
• Research 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 health
• The ethical conduct of some researchers has been
  questionable.

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Background

• Proactive Approach to Research
• A 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 researchers
• Participants 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.

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• 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 fatigue
• Generally, research has not lead to improved
  community health
• The ethical conduct of some researchers has been
  questionable (from a First Nations perspective).

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Our Vision for Culturally Appropriate Research

• To 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.

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Development Process

• Summer 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
• .

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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.

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Aboriginal Ethical Research Guidelines

• The Aboriginal Ethical Guidelines were developed
  in collaboration with an Elders Group
• Based on seven grandfather teachings
• Respect, Bravery, Truth, Humility, Honesty, Love
  and Wisdom

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Aboriginal Ethical Research Guidelines

• Some 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?

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Guidelines for Ethical Aboriginal Research (GEAR)

• GEAR components
• Our Vision for Culturally appropriate Aboriginal
  Research on Manitoulin
• Aboriginal Ethical Guidelines for research
• Ethical 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 contracts
• References

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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.

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GEARReview process for research projects
Medicine wheel
NORTH
Applicant/ Researcher

Community/ Organization
Ethics Review
Eastern Doorway Birth of Project/Idea
Western Doorway Completion of Project
JourneyResearch Project is in place
Manitoulin Anishinabek Research Review Committee

• 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)

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

• Local Committee
• Pros
• Committee members are knowledgeable about
  communitys politics, culture, language, beliefs
  and values
• Community representation on committee allows for
  local input
• Builds capacity in the communities
• Communities decide what type of research is
  appropriate and will benefit the community
• More likely to represent the views of the
  community
• Local process can be very helpful to connect with
  the community people
• Opportunities for collaborative research

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

• Local Committee
• Cons
• Can be time consuming for committee members
• Not a big pool of people to draw on for
  membership
• Everyone knows everyone so there is potential for
  real or perceived conflicts of interest.
• Need financial and administrative support to
  function
• Need 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

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

• Centralized REB
• PROS
• A 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 perspective
• Detached from the community which can be a
  positive and a negative aspect

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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

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Manitoulin Anishinabek Research Review Committee

• Committee Members
• Lorrilee McGregor, M.A. Research Director,
  Community-Based Research,
• Lenore Mayers, Administrative Program Support ,
  Noojmowin Teg Health Centre
• Marjory Shawande, Traditional Coordinator,
  Noojmowin Teg Health Centre
• Cheri Corbiere, Sheshegwaning First Nation
• Steven Fox-Radulovich, IT Consultant
• Susan Manitowabi, Professor/Coordinator, Native
  Human Services, Laurentian University
• Niki Naponse, Executive Director, Za-geh-do-win
  Information Clearinghouse
• Phyllis 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_at_noojmowin-teg.ca
• Or visit our website at
• www.noojmowin-teg.ca