Collaborative Action on Fetal Alcohol Spectrum Disorder Prevention: Principles for Enacting the Truth and Reconciliation Commission Call to Action #33.

The association between fetal alcohol spectrum disorder (FASD), residential schools and subsequent assimilatory policies in Canada is of such significance that it was included in the groundbreaking Truth and Reconciliation Commission of Canada's Final Report through Call to Action #33, which focuses on collaboratively developing FASD prevention programs in Indigenous communities. A consensus statement with eight tenets for enacting Call to Action #33 was co-developed in May 2017 using a Two-Eyed Seeing approach during and after a meeting on Indigenous approaches to FASD prevention held in Canada. The consensus statement provides guidance for creating community-based, culture-led FASD prevention programs in Indigenous communities. The eight tenets reflect the diverse perspectives of Indigenous and non-Indigenous participants, are grounded in available research evidence, and align with Indigenous worldviews and wellness models. This paper uses the consensus statement and eight exemplary FASD prevention programs from Indigenous communities and organizations across Canada to highlight identity, culture, and relationships as central elements of FASD prevention in Indigenous communities. The consensus statement provides guidance for developing community- and culture-led FASD prevention programs and highlights the importance of Indigenous knowledge systems in developing and researching FASD prevention in, and with, Indigenous communities.

"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.