Developing Codes of Practice for Indigenous - CAREB

Report
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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
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Overview of the Presentation
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Context
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Questions of Interest to Explore
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Purpose of our Inquiry
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TCPS 2 Issues
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Discussion
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Questions
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Context
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UVic recently developed a Masters program in Indigenous
Language Revitalization, IED + LING
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Cohort based model; 26 students from First Nations
communities across Canada
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Many Thesis topics and Projects which involve:
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Accessing previous documentation of language, such as family
audio recordings, photos, etc.
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Working with close community members, including family
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Pre-existing community member knowledge and involvement
about the projects prior to ethics application/approval/informed
consent
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Questions of Interest to Explore
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What is the relationship between contemporary Indigenous
research and the core principles of the TCPS2 (2010)?
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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?
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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?
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Purpose of our Inquiry
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To identify TCPS2 elements raised by the proposed research
projects in the Indigenous Language Revitalization MA
Program
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To apply intersecting “ethical planes” (Chapter 9, insider
research, secondary use) to explore our three questions of
interest.
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TCPS 2 Issues
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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).
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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).
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TCPS 2 Issues
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Secondary Use of Data Research
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“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).
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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).
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Discussion (1b)
What is the relationship between contemporary
Indigenous research and the core principles of the
TCPS2 (2010)?
Contemporary Indigenous research emphasizes:
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Indigenous axiology (Wilson, 2001)
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Indigenous values that lead to ethical and principled
research actions (Hart, 2010)
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The need for non-indigenous researchers to be trained
in social and cultural competence (Heikkilä & Fondahl,
2012)
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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:
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Respectful and culturally sensitive engagement
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The need for both non-indigenous and Indigenous
researchers to learn from Indigenous communities.
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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.
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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?
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Engage in dialogue to de-mystify the REB process
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Develop research ethics knowledge (institution + community)
among student Indigenous researchers
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Expertise and learning - REB members and administrators
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Codifying Ch. 9 + fluid/contextual community processes into the
REB application and review
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Discussion (2b)
University of Victoria Standard REB application pp. 5-6.
Community Engagement
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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, email 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.
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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?
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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?
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Copyright law gives ownership to the person who makes the
recordings.
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Explanation by the researcher to the REB about what information is
recorded.
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Appropriate permissions are sought for secondary use of material.
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“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)
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Future Work
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Develop guidelines
Draw on University of Victoria expertise
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Consult with community
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Consult with students
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Consult with REB members
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Thank you
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Questions ??

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