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sector_ico_Health_trans Health sector_ico_GenomicsSociety_trans Genomics and Society

Indigenous Peoples and Genomics: Starting a conversation

SOC002
  • Project Leaders: Patricia Birch, Jenny Morgan
  • Institutions: University of British Columbia (UBC)
  • Budget: $50,000
  • Competition: Societal Issues Competition - Round 1
  • Genome Centre(s): Genome BC
  • Fiscal Year: 2017
  • Status: Active

Technology advancements and decreasing costs have made DNA sequencing more accessible than ever before. The use of genomic testing to deliver more precise diagnosis and effective treatments in what is being called precision health care could be accessible to everyone as it is taken up into clinical practice.

However, at present, genomic tests may not be equally effective for all ethnic groups, including BC’s Indigenous Peoples. This is because genomic test results are compared to anonymous reference databases of thousands of genomic variants seen in healthy people. But the frequency of these variants is not the same in all ethnicities and Indigenous Peoples are under-represented in current databases.

If certain ancestries aren’t well represented in the databases, it can be difficult to interpret the results of genomic sequencing from patients of that ancestry: variants that are common in some ancestries are rare or virtually absent in others. The effectiveness of genomic testing may be reduced when a patient’s ancestry is not well represented in the reference database, since harmful variants may go undetected or, normal variations may be mistaken for causing a medical problem.

This project seeks to initiate preliminary conversations with individuals of Indigenous ancestries to determine their perspectives, values, and concerns while raising awareness of under-representation in genomics databases. In addition to a report of the research findings, the project will deliver a short video that shares the diverse viewpoints of participants, while helping to create awareness. In the future, this film could be used to launch broader community-based participatory research on the issue via a more representative consultation with Indigenous communities across BC and Canada.