Qualitative genomic research with Indigenous peoples: a scoping review of participatory practice

Abstract

Introduction Indigenous peoples and perspectives are under-represented within genomic research. Qualitative methods can help redress this under-representation by informing the development of inclusive genomic resources aligned with Indigenous rights and interests. The difficult history of genomic research with Indigenous peoples requires that research be conducted responsibly and collaboratively. Research guidelines offer structuring principles, yet little guidance exists on how principles translate into practical, community-led methods. We identified the scope and nature of participatory practice described in published qualitative genomic research studies with Indigenous peoples.Methods We performed a search of PubMed, CINAHL, Embase, Scopus and the Bibliography of Indigenous Peoples in North America. Eligible studies reported qualitative methods investigating genomics-related topics with Indigenous populations in Canada, the USA, Australia or New Zealand. Abstracted participatory practices were defined through a literature review and mapped to a published ethical genomic research framework.Results We identified 17 articles. Published articles described a breadth of methods across a diversity of Indigenous peoples and settings. Reported practices frequently promoted Indigenous-partnered research regulation, community engagement and co-creation of research methods. The extent of participatory and community-led practice appeared to decrease as studies progressed.Conclusion Applying non-prescriptive Indigenous genomic research guidelines to qualitative inquiry can be achieved through varied methodological approaches. Our findings affirm the adaptive nature of this process in real-world settings and identify opportunities for participatory practice and improved reporting across the research lifecycle. These findings and the breadth of characterised applied research practices are instructive for researchers seeking to develop much-needed qualitative genomic research partnerships.