research involving aboriginal peoples: canadian policy experience doris cook, phd, mph global forum...
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Research Involving Aboriginal Peoples: Canadian Policy Experience
Doris Cook, PhD, MPH Global Forum on Bioethics in Research
Auckland, New ZealandDecember 4, 2008
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Aboriginal Critiques of Research
Benefits accrue to researchers Exploitation Lack of involvement Lack of control Relevance Misrepresentation/stigmatization
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Results in …
An erosion of trust between researchers and the Aboriginal communities
Suspicion and hostility toward research
Reluctance of communities to participate in research that may be beneficial
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The Policy Context No protections for Aboriginal research
participants beyond TCPS
1998 TCPS developed independent of Aboriginal involvement
Unsustainable position – CIHR premier funder of Aboriginal health research lacked protections for Aboriginal research participants
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CIHR Project Response Setting ground rules that promote
mutually beneficial research that respects Aboriginal culture and values and provides clear guidance for researchers
Promoting respectful partnerships between researchers and communities
Provides ACADREs and Aboriginal communities with ethical guidance on health research
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Context for Guidelines
TCPS provides individual level protections, focus of guidelines is community protections
Required for CIHR funded health research Designed to be used by REBs,
researchers, students and, communities Not meant to supersede local guidelines or
requirements
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Getting Credible Advice
The Aboriginal Ethics Working Group: 12 Outstanding individuals Multidisciplinary representation Urban, rural and geographic mix All Aboriginal groups represented 10 Academically based researchers Experienced in development of
indigenous research guidelines
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Founded on a Partnership
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Project Strategy “Bottom Up” process consistent with
traditional values and culture Community and Elder Dialogues on cultural
values and ethics Guidelines based on background and issues
papers and on traditional values Consultation included Aboriginal, institutional
and research communities Broad vetting with 3 communities
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Community Concerns
Benefit to community Cultural appropriateness of research Part of research team and capacity building Secondary use of data Data sharing, reporting of results to
community
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Community Benefit
Research must mutually benefit the community and researchers
Researchers should support education and training for Aboriginal peoples and communities
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Jurisdiction and Partnership
Community jurisdiction should be understood and respected
Communities should be given the option of a participatory research approach
Indigenous concerns over intellectual property must be explicitly acknowledged and addressed in a research agreement
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Cultural Appropriateness of Research Need to understand and respect Aboriginal
world-views Cultural knowledge under mutually agreed
terms and under guidance of knowledge holders
Learn about and apply cultural protocols relevant to the particular Aboriginal community
Translate into community language
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Cultural Appropriateness of Research (2)
Ensure an effective on-going communication that is accessible and understandable to the community
Aboriginal communities should have an opportunity to participate in the interpretation of data and/or review of conclusions drawn from the research
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Secondary Use of Data
Respecting community jurisdiction Recognizing that communities have a
proprietary interest in the collection, use, storage and potential future use of data
Biological research samples are “on loan” to the researcher
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Data Sharing, Reporting of Results
Respecting and addressing the confidentiality and privacy concerns of the community
Ensuring due credit for the community and participation in dissemination of results, and publications
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Why Research Needed
Because of alarming rates of: chronic disease and diabetes injuries and accidents mental health issues and suicide
Funding research that address critical health issues