title: Reconciling community-based Indigenous research and academic practices: Knowing principles is not always enough.
abstract: Historically, Indigenous health research in Canada has failed to engage Indigenous peoples and communities as primary stakeholders of research evidence. Increasingly, research ethics and methodologies are being positioned as tools for Indigenous self-determination. In response, mainstream institutions have developed new ethical principles for research involving Indigenous people. While these transformations are necessary steps towards re-orienting research practices, they are not prescriptive. In this paper, we make visible three dilemmas from a case study in which Indigenous health research frameworks provided limited guidance or were unclear about how to balance community priorities with Indigenous research principles. We also discuss the strategies used to resolve each of these dilemmas. We draw examples from a project that examined the lived experiences of children and youth living with FASD and their caregivers. This project was conducted in collaboration with Sheshatshiu Innu First Nation, an Indigenous community in Labrador, Canada. In doing so, we argue that knowing the key guiding principles in Indigenous health research is not always enough, and that the 'real-world' context of practices and relationships can lead to conflicts that are not easily resolved with adherence to these principles.
authors.affiliation: Well Living House, Centre for Urban Health Solutions (C-UHS), Li Ka Shing Knowledge Institute, St. Michael's Hospital, Affiliated with University of Toronto, 30 Bond Street, Toronto, Ontario, M5B 1W8, Canada. Electronic address: melodym@mun.ca.
authors.forename: Melody E
authors.initials: ME
authors.lastname: Morton Ninomiya
authors.affiliation: Labrador Institute, Faculty of Medicine, Memorial University, Happy Valley-Goose Bay, Newfoundland and Labrador, Canada.
authors.forename: Nathaniel J
authors.initials: NJ
authors.lastname: Pollock
mesh_terms: D002170:Canada; D055812:Community-Based Participatory Research; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D026684:Personal Autonomy; D044382:Population Groups / Q000941:ethics*; D012107:Research Design / Q000592:standards / Q000639:trends*
keywords: Aboriginal health; Circumpolar health; Community-based participatory research; Decolonizing methodologies; Fetal alcohol spectrum disorder; Indigenous health; Qualitative