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Working Together with Indigenous Peoples to Enhance Equity and Access in Precision Health

By August 21, 2017No Comments

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.

A new project funded by Genome BC 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.

“We hope to start the conversation and bring awareness to the Indigenous community on genomic sequencing and to uncover the barriers that may prevent patients from accessing genomic sequencing,” said Jenny Morgan, director, Indigenous Health program, BC Women’s Hospital + Health Centre. “Our goal is to share learnings with leaders and partners through a participatory approach while being culturally safe in addressing these barriers‎ that may impact future health outcomes.”

“Any attempt to address disparities in translating genomic medicine equitably for all British Columbians must put the values and concerns of Indigenous Peoples at the forefront” said Patricia Birch, also a project co-leader and Clinical Associate Professor, Medical Genetics, at the University of British Columbia (UBC). “This is consistent with the Truth and Reconciliation Commission’s call to identify and close the gaps between Indigenous and non-Indigenous Canadian’s healthcare.”

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.

“Genomics can offer advantages over conventional methods for diagnosing many medical conditions, sometimes pointing to new treatment options.” said Dr. Catalina Lopez-Correa, Chief Scientific Officer and VP, Sectors at Genome BC. “However, these innovations can only benefit everyone if the appropriate data is available to classify normal variants within any population.”

This project Indigenous Peoples and Genomics: Starting a Conversation, is valued at $50,000 and was funded through Genome BC’s Societal Issues Competition.