Forced resilience: Indigenous perspectives on systemic barriers and humanizing genomic medicine in British Columbia, Canada.

Abstract

Genome sequencing (GS) expedites rare disease diagnosis; yet, its benefits remain inequitably distributed. Systemic health care barriers compound genomic underrepresentation to prolong Indigenous children's diagnostic odyssey. We explored Indigenous families' views on accessing and implementing GS as a clinical diagnostic service to inform equitable service design. Together with an Indigenous Advisory Council, we used a talking circle approach to conduct virtual semistructured focus groups with urban-living Indigenous adults in British Columbia, Canada. We performed deductive and inductive thematic analysis to create themes collaboratively with our Indigenous Advisory Council. We returned preliminary interpretations for participants' review and feedback through member checking surveys. Twenty-four individuals participated across 5 focus groups and 1 interview. Participants highlighted resilience as imposed, detrimental, and normalized within health care. They identified a lack of accessible and safe care, the normalization of self-advocacy, and experiences of racism as impeding families' willingness to pursue and benefit from GS. Participants recommended humanizing practices grounded in respectful relations, advocacy support, cultural safety, and Indigenous perspectives on health and wellness. Improving genomic medicine for Indigenous children and families demands more than biomedical advances. Equitable implementation requires collective action to transform health care systems and policies that perpetuate forced resilience.