Indigenous Peoples and genomics: Starting a conversation

Area of Science:

• Genomics
• Bioethics
• Indigenous Health

Background:

• Indigenous Canadians are disproportionately affected by uninterpretable genome-wide sequencing results.
• This inequity stems from the underrepresentation of Indigenous genomes in global reference databases.
• Lack of representation perpetuates health disparities and limits the utility of genomic medicine for Indigenous populations.

Purpose of the Study:

• To initiate a dialogue with Indigenous Canadians regarding genomic data representation and its implications.
• To raise awareness about genomic non-representation and its impact on Indigenous health outcomes.
• To co-create educational resources that incorporate Indigenous perspectives on genomic data.

Main Methods:

• Conducted focus groups with 30 First Nations, Métis, and Inuit individuals in Greater Vancouver.
• Participants engaged in discussions after viewing an introductory video on genomic testing.
• Transcripts were analyzed thematically, with participant quotes integrated into a co-created awareness video.

Main Results:

• Key themes emerged: systemic racism, trust, data governance, privacy, and fear of discrimination.
• Participants expressed a need for Indigenous control over genomic data, with divided opinions on separate vs. international databases.
• Emphasis was placed on obtaining prior approval from Indigenous leaders for data collection and implementation.

Conclusions:

• Addressing genomic inequity requires centering Indigenous voices and concerns.
• Building trust and ensuring data sovereignty are crucial for equitable genomic research and healthcare.
• Co-created resources can empower Indigenous communities and foster informed discussions on genomic data usage.