Indigenous Peoples and genomics: Starting a conversation

• Published in: Journal of genetic counseling 2019-04, Vol.28 (2), p.407-418
• Main Authors: Morgan, Jenny, Coe, Rachel R., Lesueur, Rochelle, Kenny, Ruth, Price, Roberta, Makela, Nancy, Birch, Patricia H.
• Format: Article
• Language: English
• Subjects: Adult; Aged; Aged, 80 and over; Canada - ethnology; Discrimination; Fear & phobias; Feedback; Female; First Nations; Genetic Testing; genetic testing disparities; genomic sequencing; Genomics; Governance; Health Services, Indigenous; Healthcare Disparities - ethnology; healthcare inequity; Humans; Indians, North American - ethnology; Indigenous Peoples; Inequality; Inuit; Inuits; Male; Middle Aged; Native peoples; Privacy; Qualitative Research; Racism - ethnology; reconciliation; reference databases; Service Delivery and Community Engagement; Special Issue; Systemic racism; Young Adult
• ISSN: 1059-7700; 1573-3599
• DOI: 10.1002/jgc4.1073

Compared to European ancestral groups, Indigenous Canadians are more likely to have uninterpretable genome‐wide sequencing results due to non‐representation in reference databases. We began a conversation with Indigenous Canadians to raise awareness and give voice to this issue. We co‐created a video explaining genomic non‐representation that included diverse Indigenous view‐points. We audio‐recorded the focus groups including 30 First Nations, Métis, and Inuit individuals living in Greater Vancouver. After watching an introductory video explaining genomic testing, participants discussed issues surrounding collecting Indigenous genomic data, its control, and usage. Transcripts were analyzed, and participants’ quotes representing main themes were incorporated into the introductory video. Indigenous participants discussed data interpretation and gave approval for quote usage. The 20 participants who provided feedback concurred with the thematic interpretation: Systemic racism interlaced most conversations, particularly within the theme of trust. Themes of governance emphasized privacy and fear of discrimination. Some participants thought a separate, Indigenous‐controlled database was essential; others recognized advantages of international databases. The theme of implementation included creative ideas to collect Indigenous genomes, but prior approval from Indigenous leaders was emphasized. The final video (https://youtu.be/-wivIBDjoi8) was shared with participants to use as they wish to promote awareness and ongoing discussion of genomic diagnostic inequity.