Niqivut Silalu Asijjipalliajuq: Building a Community-Led Food Sovereignty and Climate Change Research Program in Nunavut, Canada.

The history of health research in Inuit communities in Canada recounts unethical and colonizing research practices. Recent decades have witnessed profound changes that have advanced ethical and community-driven research, yet much work remains. Inuit have called for research reform in Inuit Nunangat, most recently creating the National Inuit Strategy on Research (NISR) as a framework to support this work. The present study details the process undertaken to create a research program guided by the NISR to address food security, nutrition, and climate change in Inuit Nunangat. Four main elements were identified as critical to supporting the development of a meaningful and authentic community-led program of research: developing Inuit-identified research questions that are relevant and important to Inuit communities; identifying Inuit expertise to answer these questions; re-envisioning and innovating research methodologies that are meaningful to Inuit and reflect Inuit knowledge and societal values; and identifying approaches to mobilizing knowledge that can be applied to support food security and climate change adaptation. We also identify considerations for funding agencies to support the meaningful development of Inuit-led research proposals, including aligning funding with community priorities, reconsidering who the researchers are, and investing in community infrastructure. Our critical reflection on the research program development process provides insight into community-led research that can support Inuit self-determination in research, enhance local ethical conduct of research, privilege Inuit knowledge systems, and align Inuit-identified research priorities with research funding opportunities in health research. While we focus on Inuit-led research in Nunavut, Canada, these insights may be of interest more broadly to Indigenous health research.

Initial management of an outbreak of the HTLV-1 virus in Nunavut, Canada.

BACKGROUND: HTLV-1 is a retrovirus known to be endemic in Japan, the Caribbean, and parts of Africa. HTLV-1 infection is rare in Canada. The last known cases prior to the present cluster in Nunavut occurred in 1993, when three Aboriginal patients with neurological symptoms in British Columbia were found to be infected with HTLV-1. The Dept. of Health and Social Services in Nunavut became aware of the presence of this virus in the Nunavut population in early June, 2005 when an individual infected with HTLV-1 died from Acute T-cell leukemia. STUDY DESIGN: A report of the interventions done by the Department in response to this outbreak. METHODS: Interviews with the key informants in the Department. A review of the record of meetings, community consultations, expert consultations and communiqués was conducted. Key information points were summarized. RESULTS: A Nunavut Dept. of Health and Social Services Task Force on HTLV-1 was established. Investigation of the population in the community in which the index case was found using blood samples to identify the virus in the carriers and for antibodies in first-degree relatives of the carriers. A literature review and summary of the epidemiology of the cluster was performed. An intense educational and counseling program regarding HTLV-1 infection was initiated for the (200) health care workers in the Territory and residents in the affected communities. A territory wide publicity and educational package was developed and implemented via meetings, press conferences, and telehealth sessions. Clinical protocols for monitoring the health status of infected individuals have been implemented. Ante-natal screening for HTLV-1 has been initiated, Territory-wide. An unlinked, anonymous HTLV-1 seroprevalence study began in early 2006. To date, approximately 300 persons have been tested for HTLV-1 in Nunavut. The number of infected individuals is less than 20. CONCLUSIONS: HTLV-1 infection is present in Nunavut. The prevalence is unknown. There has been at least one death from Acute T-cell leukemia in an individual infected. Prenatal screening and the seroprevalence study should provide important information on the breadth of the problem and allow the Department to implement appropriate measures to better manage the spread of the virus and the clinical cases of those infected with it.