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Guidelines for Ethical Aboriginal Research:


Guidelines for Ethical Aboriginal Research: A Community based Aboriginal Ethics Review Process A Presentation By: Niki Naponse Manitoulin Anishinabek Research ... – PowerPoint PPT presentation

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Title: Guidelines for Ethical Aboriginal Research:

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
Guidelines for Ethical Aboriginal Research,
Manitoulin Island Area
  • Manitoulin Island large freshwater island in
    Northern Ontario, Canada and is 2766 square
  • 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

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
  • 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

Concerns about research in First Nation
  • 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

  • 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.

  • Community Concerns about Research in local First
  • 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).

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.

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
  • 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

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
  • 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 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

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?

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
  • 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

Manitoulin Anishinabek Research Review Committee
  • 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
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 /
  • 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
  • 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
  • Local process can be very helpful to connect with
    the community people
  • Opportunities for collaborative research

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
  • Everyone knows everyone so there is potential for
    real or perceived conflicts of interest.
  • Need financial and administrative support to
  • 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

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

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 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
  • For more information, please contact Lenore
    Mayers at 706-368-2182 or
  • email at
  • Or visit our website at
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