"Making a place of respect": lessons learned in carrying out consent protocol with First Nations elders.

BACKGROUND: This article explores the issue of informed consent by First Nations Elders modifying and implementing a substance abuse prevention program for youth, Nimi Icinohabi, among the Alexis Nakota Sioux Nation. The Elders who approved and guided the research maintained that informed consent procedures carried out by the Western academic institutions were redundant given adherence to their own culturally based protocol.
OBJECTIVES: The objective of this article is to present lessons learned regarding the cultural basis of consent involving First Nations Elders to improve our own and other researchers' ethical practice in this context.
METHODS: Two focus groups were held with our team of community and university-based researchers (n = 6) to discuss our experience of the Elder consent procedures used during the project.
RESULTS: Elder involvement was integral to the success of the program. Using methods of consent originating from Western thought and given historical and ongoing issues of trust with Western institutions, signing consent forms was unacceptable to them and perceived as undermining their own ethical practices. An oral consent process utilizing cultural protocol and a tool to keep track of participation in this process was subsequently approved by our Research Ethics Board (REB) and used successfully.
CONCLUSIONS: When researchers use standard informed consent practices, they risk losing the trust of community partners by undermining cultural values and practices. As academic researchers, it is our ethical responsibility, in the spirit of restorative justice, to honor the principles of beneficence and justice in research by ensuring consent within the context of cultural protocol.