Research Involving Aboriginal Peoples: Canadian Policy Experience

Doris Cook, PhD, MPH Global Forum on Bioethics in Research

Auckland, New ZealandDecember 4, 2008

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