Chapter 9: Research with Inuit, Métis and First Nations Peoples – Balancing Academic and Community Values Dr. Lynn Lavallée, Ryerson University Canadian Association of Research Ethics Boards Saturday, May 1, 2015 Vancouver, BC

Honouring the Traditional Territory Aboriginal values becoming the norm in the academy Musqueam, Squamish Tsleil-Waututh

Overview Overview of Chapter 9 Articles Conflicting values and other issues Hiring/building capacity Dissemination Honoraria for advisors/elders/traditional knowledge keepers Intellectual property Recommendations for REBS

Community Responses Contributed to Chapter 9 National Aboriginal Health Organization Ownership Control Access Possession (Schnarch, 2004) Five R’s from First Nations education + Respect Reciprocity Relationships Responsibility (Kirness & Barnhardt, 2001) Relevance (Lorilee McGregor)

Community Response www. naho Community Response www.naho.ca/documents/metiscentre/english/PrinciplesofEthicalMetisResearch-descriptive_001.pdf Six Principles of Métis Research (NAHO) Reciprocal relationships Respect for individual and collective, autonomy, identity, personal values, gender, confidentiality, practice and protocols Safe and inclusive environments Recognize diversity within and between Métis Relevant, benefit all, accurate, accountable, responsible, acknowledge contribution, protect Métis cultural knowledge Métis context – history, values, knowledge, etc.

Research in the North/Inuit Association for Canadian Universities for Northern Studies (ACUNS). (2003). Ethical Principles for Conduct of Research in the North. Ottawa. www.acuns.ca/ethical.htm Aurora Research Institute. (2009). Guide for Research in the Northwest Territories. http://wiki.nwtresearch.com/ResearchGuide.ashx Nunavut Research Institute. (2006). Licensing Process. Iqaluit. www.nri.nu.ca/lic_process.html

Canadian Ethics www.pre.ethics.gc.ca Tri Council Policy Statement – TCPS www.pre.ethics.gc.ca

TCPS Chapter 9 Research Involving the First Nations, Inuit and Métis Peoples of Canada 2014 22 Articles to help guide researchers and research ethics boards in reviewing research protocols Application across universities and provinces varies

TCPS Chapter 9 Defines who Aboriginal people are Inuit, Métis and First Nations Emphasize diversity within groups Requirement of Community Engagement in Aboriginal Research On lands Recruitment criteria including Aboriginal identity Cultural heritage, artefacts, traditional knowledge Interpretation of results will refer to Aboriginal as a variable

Challenges You are collecting demographic data on ethnicity which includes First Nations, Inuit or Métis. Article 9.1(d) of the TriCouncil Policy Statement states that community engagement is required for research in which Aboriginal identity or membership in an Aboriginal community is used as a variable for the purpose of analysis of the research data. While your project is not specific to the Aboriginal community, you are asking a question about Aboriginal identity. If the data you collect allows you to analyze this specific variable and you will be making inferences about Aboriginal people you will be required to engage the Aboriginal community in question prior to publishing such results.

Difficult to Assess Chapter 9 Demonstrating engagement Research agreements (9.11) Letter of approval Respect for Governing Authorities Comples Authority Structures Diverse Interests Collaborative Research (9.12) Respectful relationships Participatory designs Difficult to Assess

Chapter 9 Community REBs 9.10 – Requirement to Advise on Plan for Community Engagement Where engagement is not being proposed researchers shall provide a rationale acceptable to the REB REB member must understand the political identity of specific communities Mutual benefits (9.13)

Chapter 9 Capacity building and strengthen research capacity (9.14) Hire Aboriginal people Does your REB assess this? Recognition of the role of Elders (9.15) Provide ethical guidance Paying honoraria – consultant fees!

Chapter 9 Interpretation and dissemination of research results (9.17) Intellectual property (9.18) Significant challenges Ideologically different Indigenous knowledge cannot be intellectual property Publications & dissemination REB reviewers look for this in the research agreement!

Chapter 9 Biological materials and secondary use (9.19-22) Secondary use of information or bio materials identifiable as originating from Aboriginal peoples Linking two or more anonymous datasets or human bio material (avoid another Dr. Ward)

Practical Suggestions for REBs Ask the questions Modify protocol forms Engagement, research agreement, dissemination, intellectual property, mutual benefit, building capacity Does the researcher/s know the community? Political and cultural identity Ontario – COO, independents, Métis, Native Women’s (ONWA), Inuit Tapiriit Kanatami Build capacity in REB How does your REB ensure this expertise?

Where do we go from here? Communities are developing their own research ethics guidelines!

Where do we go from here? We are here! Infiltrate to Transformate the Colonial System

Huy tseep q’u Miigwetch Thank you