+ Developing Codes of Practice for Indigenous Research Suzanne Urbanczyk, HREB Member, Assoc Prof, Linguistics Eugenie Lam, Ethics Coordinator Wanda Boyer, Chair HREB, Associate Prof. Educational Psychology University of Victoria

+ Overview of the Presentation Context Questions of Interest to Explore Purpose of our Inquiry TCPS 2 Issues Discussion Questions

+ Context UVic recently developed a Masters program in Indigenous Language Revitalization, IED + LING Cohort based model; 26 students from First Nations communities across Canada Many Thesis topics and Projects which involve: Accessing previous documentation of language, such as family audio recordings, photos, etc. Working with close community members, including family Pre-existing community member knowledge and involvement about the projects prior to ethics application/approval/informed consent

+ Questions of Interest to Explore What is the relationship between contemporary Indigenous research and the core principles of the TCPS2 (2010)? What are the circumstances under which Indigenous researchers need REB approval and community engagement to perform insider research with members of their family or community, and what are the reasonable limits that REBs might consider? Regarding secondary materials, who are the individuals who have intellectual property ownership of this traditional knowledge, and how will the type of secondary data and its ownership impact informed consent?

+ Purpose of our Inquiry To identify TCPS2 elements raised by the proposed research projects in the Indigenous Language Revitalization MA Program To apply intersecting “ethical planes” (Chapter 9, insider research, secondary use) to explore our three questions of interest.

+ TCPS 2 Issues Chapter 9: RESEARCH INVOLVING THE FIRST NATIONS, INUIT AND MÉTIS PEOPLES OF CANADA “Research involving Aboriginal peoples in Canada has been defined and carried out primarily by non-Aboriginal researchers. The approaches used have not generally reflected Aboriginal world views, and the research has not necessarily benefited Aboriginal peoples or communities”(p. 105). Insider Research “institutional REBs may be concerned about researchers being in a conflict of interest and should manage the conflict of interest in accordance with Articles 7.2 and 7.4” (p. 119). “community engagement is important to ensure that the following considerations are reviewed: the potential impact of such research on the wider community; conflicts between the individualist norms of the academic environment and the norms of the community; and the possibility of unclear or mistaken assumptions on the part of participant and researcher “ (p. 119).

+ TCPS 2 Issues Secondary Use of Data Research “Article 9.20 Secondary use of data and human biological material identifiable as originating from an Aboriginal community or peoples is subject to REB review. Researchers shall engage the community from which the data or human biological materials and associated identifiable information originate, prior to initiating secondary use […]”(p. 130). “Individual consent for the secondary use of identifiable information is required unless the REB agrees that either Articles 5.5 or 5.6, or Articles 12.3 or 12.4 may apply.” (p. 131). Article 5.5 (Ch. 5 Privacy and Confidentiality) “Secondary use refers to the use in research of information originally collected for a purpose other than the current research purpose” (emphasis added, p. 62).

+ Discussion (1a) What is the relationship between contemporary Indigenous Research and the core principles of the TCPS2 (2010)? Chapter 9: RESEARCH INVOLVING THE FIRST NATIONS, INUIT AND MÉTIS PEOPLES OF CANADA “This chapter is designed to serve as a framework for the ethical conduct of research involving Aboriginal peoples. It is offered in a spirit of respect. It is not intended to override or replace ethical guidance offered by Aboriginal peoples themselves. Its purpose is to ensure, to the extent possible, that research involving Aboriginal people is premised on respectful relationships. It also encourages collaboration and engagement between researchers and participants” (p. 105).

+ Discussion (1b) What is the relationship between contemporary Indigenous research and the core principles of the TCPS2 (2010)? Contemporary Indigenous research emphasizes: Indigenous axiology (Wilson, 2001) Indigenous values that lead to ethical and principled research actions (Hart, 2010) The need for non-indigenous researchers to be trained in social and cultural competence (Heikkilä & Fondahl, 2012)

+ Discussion (1c) What is the relationship between contemporary Indigenous research and the core principles of the TCPS2 (2010)? Both Contemporary Indigenous research and the TCPS2 core principles emphasize: Respectful and culturally sensitive engagement The need for both non-indigenous and Indigenous researchers to learn from Indigenous communities. The need for researchers to provide as much context in ethical applications as possible in order to educate REBs to cultural nuances within the community.

+ Discussion (2a) What are the circumstances under which Indigenous researchers need REB approval and community engagement to perform insider research with members of their family or community, and what are the reasonable limits that REBs might consider? Engage in dialogue to de-mystify the REB process Develop research ethics knowledge (institution + community) among student Indigenous researchers Expertise and learning - REB members and administrators Codifying Ch. 9 + fluid/contextual community processes into the REB application and review

+ Discussion (2b) University of Victoria Standard REB application pp Community Engagement 2a. If you answered “yes” to questions a), b), c), d) or e), have you initiated or do you intend to initiate an engagement process with the Aboriginal collective, community or communities for this study? Yes No 2b. If you answered “yes” to question 2a, describe the process that you have followed or will follow with respect to community engagement. Include any documentation of consultations ( i.e. formal research agreement, letter of approval, communications, etc. ) and the role or position of those consulted, including their names if appropriate: No community consultation or engagement If you answered “no” to question 2a, briefly describe why community engagement will not be sought and how you can conduct a study that respects Aboriginal communities and participants in the absence of community engagement.

+ Discussion (3) Regarding secondary materials, who are the individuals who have intellectual property ownership of this traditional knowledge, and how will the type of secondary data and its ownership impact informed consent? Copyright law gives ownership to the person who makes the recordings. Explanation by the researcher to the REB about what information is recorded. Appropriate permissions are sought for secondary use of material. “This may include engaging with extended family members, peers of the participant with how the researcher’s interpretations can be validated, or Elders knowledge about cultural rules governing disclosure or privileged information.” (Article 9.8)

+ Future Work Develop guidelines Draw on University of Victoria expertise  Consult with community  Consult with students  Consult with REB members

+ Thank you Questions ??