Developing collaborative research to identify the impacts of Helicobacter pylori genomics research on northern Canadian Indigenous communities

PROJECT LEAD(S)/CO-LEAD(S) Karen Goodman (University of Alberta)
COMPETITION/ FUNDING OPPORTUNITY Genome Canada and Social Sciences and Humanities Research Council (SSHRC) - Societal Implications of Genomics Research
PROJECT START DATE October 1, 2018
PROJECT END DATE September 30, 2022

Since 2007, over 1200 residents of Indigenous communities in the Northwest Territories (NWT) and Yukon (YT) have participated in research to learn more about Helicobacter pylori infection. A working group formed that included Indigenous community members, their healthcare providers, territorial health authorities, and academic researchers demonstrated that the community concerns were well founded. They estimated that Helicobacter pylori infects the stomach lining of humans is 23 times more prevalent in northern Canadian Indigenous communities than across southern Canada. Concerned by the increased health burden, communities have advocated to study the bacteria in more detail. This project seeks to address microbial genomics data management challenges by generating information required to develop data sharing processes that respect community values for Helicobacter pylori genomics research.  Specifically, the team aims to: 1) describe the current policies that govern sharing of microbial genomics data generated by Indigenous research partnerships, and 2) identify the potential impacts of H. pylori genomics data sharing on the Indigenous communities and groups whose members donate specimens. The project will collect data on the impacts of genomics research in a shared learning environment, where Indigenous and academic research partners can work together to generate data and produce research outputs that provide insight into the societal impacts of genomics projects on Indigenous communities who request the research.

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