ICHR Facilitators:
- Susan Chatwood, Denise Kurszewski, Bryany Denning
Partners:
- Gwen Healey (Qaujigiartiit/Arctic Health Research Network – Nunavut), Jody Butler Walker, Norma Kassi (Arctic Health Research Network – Yukon)
Funder:
- Tri-territorial Health Access Fund
In 2006, ICHR, Qaujigiartiit/Arctic Health Research Network – Nunavut, and Arctic Health Research Network – Yukon, undertook a project to examine health research ethics and ethical review in the North. Upon the publication of the CIHR guidelines for research involving Aboriginal people, it was recognized that a comprehensive review of territorial practices was required so appropriate structures could be put in place to uphold, build on, and consider these guidelines. The goal was to bring together existing capacity in the regions to collaborate to address the lack of frameworks, expertise and resources for ethical review of health research projects in territorial jurisdictions.
Consultations and review
Information on existing perceptions and practices for ethical review of health research in the northern territories was gathered using mixed methods. This included a review of the published and grey literature on ethics in aboriginal populations. Community consultations were held and gathered information on the nature of informed consent, the meaning of being ethical from an indigenous perspective, and the ethical concerns of communities. There was a synthesis of findings between consultations and the literature review.
Cross-cutting issues across the North
The following regional findings were identified and cross-cutting issues were identified:
- licensing processes;
- principles of respect, trust and relationship building (particularly with respect to community conflict, the nature of informed consent, and the handling of sensitive/protected information/knowledge);
- meaningful engagement with communities;
- the use of appropriate research methods;
- and the sharing of knowledge and communicating results.
Tool development for community-based reviewers
In the northern regions, community based reviewers play an important role in ethical review of health research projects. An Ethics Checklist Tool for Community Proposal Reviewers was developed as an aid to help prompt questions about ethical issues.
Pan-northern meeting of stakeholders
In January 2009 and again in February 2010, pan northern stakeholders and organizations currently involved in ethical review of health research or with mandates to conduct ethical review met. This included representation from the 5 northern regions (Yukon, Northwest Territories, Nunavut, Nunavik and Labrador). This provided an opportunity to discuss the cross-cutting issues related to ethical review of health research, and what next steps could be taken to address capacity issues for the northern regions.
Northern Health Research Ethics Board
The group decided to move forward on the formation of a Northern Health Research Ethics Review Board/Council to address immediate needs for proposal review of health research by some participating stakeholders.
Next Steps
A steering committee comprised of representatives from organizations that wish to make use of the board is being formed. The steering committee members will represent their organizations and will be in a position to identify their REB needs and ability to share resources. Specifically, the committee will explore issues related to location and framework for the REB, representation on the board and methods to select members, the scope of practice for the REB, and the relationship of the REB to related institutes and organizations working in health research activities in the regions served. A business plan will be created with a framework which ensures long term sustainability and capacity requirements and training for the board.
