The RHS and REEES are bound by a Code of Ethics, which are a set of principles that help the FNIGC fulfill the project mandate.
According to RHS Code of Ethics, the purpose is to “establish a framework of principles and procedures to guide the members of the First Nations Information Governance Committee to accomplish the mandate and objectives of the First Nations Regional Longitudinal Health Survey. This Code outlines the responsibilities of each member through all aspects and phases of the surveys and potential spin-off research to its conclusion” (FNRHS Code of Ethics, 2007).
It is acknowledged and respected that the right of self-determination of First Nations includes the jurisdiction and authority to make decisions about research in their communities. The benefits to the communities, to each region and to the national effort should be strengthened by the research. Research should facilitate First Nation communities in learning more about the health and well being of their peoples, taking control and management of their health information and assist in the promotion of healthy lifestyles, practices and effective program planning. The First Nations Information Governance Committee promotes making the most of the funding opportunity on behalf of First Nations. We will reclaim the original foundations of our health and healing.
The Code of Ethics also stipulates that the research projects and all related activities will adopt the principles of OCAP™ – Ownership, Control, Access and Possession. When applied to the research process OCAP™ is self-determination in action. More information about OCAP™ can be found here.
In order to fulfill our obligations to First Nations communities across Canada the RHS and REEES have undergone several levels of review at the ethical level. Once the surveys are drafted the board of directors assemble for a first round of review. After the surveys have been finalized they are given to each of the separate regions for their own regional review process.
There are many benefits of having several regional reviews conducted. Each region is able to offer feedback about the survey that makes the surveys more useful for their region. Each region across Canada has their own unique history and set of experiences. It ensures that all of our voices are heard. Additionally, each region is able to define their of review process. Again, each region is unique in its form and function and they are able to exercise self-determination in the way that the surveys are reviewed.
In Nova Scotia we review each of the surveys individually with our Regional Advisory Committees (RAC). We have one for the RHS and REEES, each comprised of experts in various fields (education, employment, health, early childhood development, research). When RAC provides feedback it is returned to the FNIGC where they synthesize the comments from all of their participant regions. This feedback is used to provide additional direction for the survey development.
The RHS and REEES also undergo several rounds of Ethical review. The surveys and research proposal have been reviewed by Harvard University and Johns Hopkins University. Their role is to ensure that the research methodology is sound and to highlight any ethical concerns that may arise from administering such a survey. The FNIGC then makes the necessary changes. Once the review is complete the projects then go to the regions where they are able to conduct their own regional ethical reviews.
In Nova Scotia we submit to the Mi’kmaw Ethics Watch (MEW) at Cape Breton University (CBU) for regional ethical review. Similar to the national review, the UNSI’s RHS/REEES team responds to their feedback until it meets their standards.
Since the UNSI works with other communities outside of Nova Scotia we encourage them to have their own ethical reviews conducted. The Mi’kmaq Confederacy of Prince Edward Island (MCPEI) opted to conduct their own review for the REEES.
In 1996, the Assembly of First Nations Chiefs Committee on Health mandated that a First Nations health survey be implemented every four years across Canada. Learn about the result here.