Canada: Colloquium on Ethics in Aboriginal Health Research, Ottawa 2003

The Anisnawbe Kekendazone Centre (AK-NEAHR – formerly ACADRE) and the Alberta ACADRE Network convened a colloquium on ethics in First Nations, Métis and Inuit health research in Ottawa, Ontario on 5 and 6 November 2003. The event began with a round table discussion among experts in First Nations, Métis and Inuit research and health research ethics; community chiefs and Elders; board members of the Ottawa ACADRE Centre, who represent the five national Aboriginal organisations; and the Alberta ACADRE Network.

The colloquium drafted a set of draft principles that should guide First Nations, Métis and Inuit health research:

1. Research should be based on informed partnerships with communities.

2. These partnerships should respect and protect indigenous knowledge, methods and protocols.

3. Ethics in research involves a process from design to dissemination of results and beyond, not just a review moment, and has cost and time implications for all partners.

4. Ethical reviews should enable rather than suppress research and evaluation.

5. Ownership, control, access and possession (OCAP) of research and its products rest with the community.

6. Collective issues should be considered in addition to individual ones (benefits, risks, consent, ownership, etc).

7. Ethical research seeks a balance between individual and collective consent, benefits and risks, confidentiality and transparency.

8. Ethical research seeks free and informed community consent in a language that is accessible and culturally relevant, and acknowledges the individual and community preferred modes of consent (for example, oral/written or individual/collective).

9. Research processes should acknowledge the dynamics and impact of power differentials within communities on the research process.

10. Research processes should acknowledge diversity within and between communities.

11. Informed community participation requires increasing ethical knowledge through capacity development at several levels.

12. Research processes should acknowledge, value and provide for community-led research and its own ethical review processes.

On November 6th, several working groups of ethicists, researchers, First Nations, Métis and Inuit representatives, and government officials discussed how the outcomes of the colloquium fit with existing policy and international practice, and how to raise awareness on core ethical principles among researchers and project evaluators.