Doris Cook, PhD, MPH Global Forum on Bioethics in Research Auckland, New Zealand December 4, 2008

1. Doris Cook, PhD, MPH Global Forum on Bioethics in ResearchAuckland, New ZealandDecember 4, 2008 Research Involving Aboriginal Peoples: Canadian Policy Experience

2. Aboriginal Critiques of Research • Benefits accrue to researchers • Exploitation • Lack of involvement • Lack of control • Relevance • Misrepresentation/stigmatization

3. 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

4. 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

5. 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

6. 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

7. 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

8. Founded on a Partnership

9. 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

10. 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

11. Community Benefit • Research must mutually benefit the community and researchers • Researchers should support education and training for Aboriginal peoples and communities

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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