Morton Ninomiya Melody E, Pollock Nathaniel J
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.
Labrador Institute, Faculty of Medicine, Memorial University, Happy Valley-Goose Bay, Newfoundland and Labrador, Canada.
Soc Sci Med. 2017 Jan;172:28-36. doi: 10.1016/j.socscimed.2016.11.007. Epub 2016 Nov 5.
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.
从历史上看,加拿大的原住民健康研究未能让原住民及其社区成为研究证据的主要利益相关者。越来越多的研究伦理和方法被定位为原住民自决的工具。作为回应,主流机构为涉及原住民的研究制定了新的伦理原则。虽然这些转变是重新调整研究实践方向的必要步骤,但它们并非规定性的。在本文中,我们通过一个案例研究揭示了三个困境,在该案例中,原住民健康研究框架提供的指导有限,或者在如何平衡社区优先事项与原住民研究原则方面不明确。我们还讨论了用于解决每个困境的策略。我们从一个项目中举例说明,该项目考察了患有胎儿酒精谱系障碍(FASD)的儿童和青少年及其照顾者的生活经历。该项目是与加拿大拉布拉多的一个原住民社区谢沙特休因纽第一民族合作开展的。通过这样做,我们认为,仅仅了解原住民健康研究中的关键指导原则往往是不够的,实践和关系的“现实世界”背景可能会导致冲突,而仅仅遵循这些原则并不容易解决这些冲突。