Guidelines for Ethical Aboriginal Research: A Community –based Aboriginal Ethics Review Process

1. 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

2. 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.

3. 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

4. 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.

5. 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.

6. 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 Nation’s perspective).

7. 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.

8. 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.

9. 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 • .

10. 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.

11. 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

12. 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?

13. 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

14. 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.

15. GEARReview process for research projects:Medicine wheel NORTH Applicant/ Researcher Community/ Organization Ethics Review Western Doorway Completion of Project Eastern Doorway Birth of Project/Idea Journey—Research 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 it’s journey from the Eastern to the Western Doorway (signifying the project from beginning to end) SOUTH

16. What are the pros and cons of a centralized vs. local committee? • Local Committee: • Pros • Committee members are knowledgeable about community’s 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

17. 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

18. 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 researcher’s perspective • Detached from the community which can be a positive and a negative aspect

19. 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

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