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

  • Author(s) / Creator(s)
  • SSHRC IDG, funded in 2018 jointly with Genomics Canada. The team has also included the SSHRC Notice of Decision, including ranking and evaluation information. The project seeks to address ethical and cultural challenges related to potential use of genomic data by generating information required to develop data sharing processes for H. pylori genomics research, that respect community values. Genomics research can generate valuable scientific knowledge. For Indigenous peoples, it offers knowledge regarding biological matters that concern them. However, current norms and expectations for openly sharing scientific data were developed to primarily benefit science and scientific researchers. Guidelines for genomics research do not consider the special context of research with Indigenous partners, who have been historically exploited by academic institutions. This project will use a community-driven research approach that uses knowledge exchange between partners to collect data. We will study the existing policies that determine how genomics data is governed, and examine how these governance structures impact communities partnering in research. We will also bring together community and academic partners to discuss the process and research norms of genomics, the history of research in the communities, and research protocols in NWT and YT. We 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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  • Type of Item
    Research Material
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  • License
    © Karen Goodman. All rights reserved other than by permission. This document embargoed to those without UAlberta CCID until 2023.