Public Health Research Involving Aboriginal Peoples: Research Ethics Board Stakeholders' Reflections on Ethics Principles and Research Processes (Qualitative Research) (Report‪)‬

Over the past 20 years, ethics principles and practices for research involving Aboriginal peoples in Canada (including First Nations, Metis and Inuit peoples) have developed in response to criticisms from Aboriginal peoples over a historical sense of betrayal by researchers. (1,2) Within Aboriginal and non-Aboriginal health research communities, there has been considerable recent discussion of the principles and best practices for respectful research in collaboration with Aboriginal peoples that acknowledges their rights and cultural values. (3-5) In the development of these principles, community partnership and direction, empowerment, co-learning, mutual respect, and the need for community benefit from research have been prioritized. (1,6-9) Key national research ethics documents developed out of collaborative processes led by Aboriginal peoples include the National Aboriginal Health Organization (NAHO)'s OCAP (Ownership, Control, Access, Possession) Principles document, and the Canadian Institutes of Health Research (CIHR) Guidelines for Health Research Involving Aboriginal People. (6,7) In December 2010, the new edition of the Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans (TCPS2) was released. It includes a revised chapter specifically on research involving Aboriginal peoples that incorporates principles from these previous documents. (6) As TCPS2 governs research involving humans that is funded by the Tri-Council (CIHR, the Social Sciences and Humanities Research Council of Canada (SSHRC), and the Natural Sciences and Engineering Research Council of Canada (NSERC)), TCPS2 provides a foundation for much of the public health research conducted with Aboriginal peoples in Canada. Among its articles, TCPS2 requires meaningful community engagement in Aboriginal research and recognition of diverse interests within communities; respect for Aboriginal governing authorities (including ethics authorities) and acknowledgement of the formal and customary authority structures; engagement with communities/organizations of relevance to the research; respect for community customs and codes of practice; community and researcher benefits from research; commitment to community research capacity-building; and opportunity to participate in data interpretation and review of research findings before finalizing publications. (6)