Research co-operation growing across the country

Page 1

Aboriginal people must have the ultimate say on how and when research is conducted in their communities and they must be full participants in any process that affects their culture, participants at a recent University of Ottawa meeting decided.

The Nov. 5 and 6 colloquium of Aboriginal and non-Aboriginal researchers and social and health policy planning experts met to set common rules on how Aboriginal research in Canada is conducted. Over the past decade, Aboriginal communities have increasingly expressed concerns about research priorities, their own level of participation, and ownership of the resultant data.

Organizers were the Ottawa ACADRE Centre and the Alberta ACADRE Network, which are affiliated with an Aboriginal health research coalition funded by the Canadian Institutes of Health Research (CIHR). ACADRE is an acronym for Aboriginal Capacity and Developmental Research Environments.

The non-governmental agency CIETcanada, which partnered with the Institute of Population Health at the University of Ottawa to co-ordinate Ottawa's ACADRE Centre, also was involved. CIETcanada is "an international group of epidemiologists and social scientists who bring scientific research methods to local governments and community levels," a spokesman for that organization and the Ottawa ACADRE centre said.

Elders and youth were present throughout.

Dr. Malcolm King, director of the Alberta Centre for Aboriginal Health Research, a physician and laboratory researcher, summed up the purpose of the gathering: "We are not trying to stop Aboriginal research, but to make it compatible with the needs and interests of the Aboriginal communities."

The first day, a round table discussion on health research ethics involved band chiefs and Elders, the five national Aboriginal organizations (Metis National Council; Inuit Tapiriit Kanatami [formerly Inuit Tapirisat of Canada]; Congress of Aboriginal Peoples; Native Women's Association of Canada; Assembly of First Nations) and members of both ACADRE networks.

The second day, working groups of ethicists, researchers and government representatives that included Aboriginal people met to discuss how they would disseminate their findings and conclusions to their various constituents and interested parties. They also considered how their decisions synchronize with existing research policy at home and abroad, and they discussed raising awareness about the principles of culturally appropriate research.

A governmental organization known as the Interagency Panel on Research Ethics made the point that key documents on human research, including the Tri Council Policy Statement, need to be broadened to include the ethical concerns of Aboriginal people.

Ten broad draft principles resulted from the two-day meeting:

* Research should be based on informed partnership with communities

* Partnerships should respect and protect Indigenous knowledge, methods and protocols

* Ethical reviews should enable rather than suppress research and evaluation

* Ownership, control, access and possession of research and its products rest with the community

* Collective issues should be considered in addition to individual ones (e.g., benefit, risks, consent)

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

* Research processes should acknowledge the dynamics and effects of power differentials within communities on the research process

* Research processes should acknowledge diversity within and between communities

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

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

Researcher Carrielynn Lamouche is the director of the Aboriginal Healing Foundation of Alberta, she is on the CIHR's standing ethics committee, and she is the co-chair of the Alberta ACARE's ethics committee. She co-chaired the Ottawa gathering.

"I was thrilled," with the way things turned out. They surpassed my expectations. The quality of the individuals that gathered around the table was absolutely rich with generations of traditional teachings," she said.

Lamouche said the purpose of the gathering was "to get the two ACADREs together to identify common issues that we could talk about and to come to some consensus over the hierarchy or the priority of those. And the most important element of it would then be to look at next steps" short-, mid- and long-term.

"We had our Elder Ed Borchert-he is he Elder for the Alberta ACADRE ethics committee ... in addition to the opening and closing ceremonies, he was able to articulate and to begin the transition of teachings-I think the biggest dilemma that we all face is how do our traditional teachings as Aboriginal people translate into something that researchers and non-Aboriginal people, or people that do not follow traditional ways-how can we translate that into something that's workable? And he began to share and he gave some very exciting teachings on some of that," Lamouche said.