Cultural, ethical, legal, and social considerations in genomics research with Indigenous Peoples: A scoping review - European Journal of Human Genetics
Indigenous communities are under-represented in genomics research, contributing to inequitable health-related knowledge, outcomes, and benefits. Under-representation reflects enduring consequences of colonial research practices that have engendered cultural, ethical, legal, and social (CELS) concerns among communities. Researchers must understand, navigate, and address these in their research practices. This study aimed to identify and synthesise CELS considerations to inform Indigenous genomics research practices. A systematic scoping review was conducted, including peer-reviewed papers on genomics that discussed cultural, ethical, legal, or social matters relevant to Indigenous Peoples globally; available in full-text and in English. Inductive content analysis using NVivo 12 Plus was undertaken to identify CELS considerations and develop content categories, with papers coded to multiple categories where relevant. As of May 2024, 186 papers were identified for inclusion: n = 70 (38%) included cultural, n = 91 (49%) ethical, n = 49 (26%) legal, and n = 125 (67%) social considerations. Cultural considerations included cultural harm, significance of blood, and the need to integrate Indigenous knowledges. Ethical considerations included consent, data access and sharing, privacy, and confidentiality. Legal considerations included laws protecting Indigenous interests, control of genomic samples and data, biovalue and DNA as a commodity, genetic discrimination, and the use of genomic data in constructing and defining racial identity. Social considerations included collective decision-making, genetic determinism, and stigmatisation, and the importance of contextualising findings within wider social determinants of health frameworks. Overall, researchers need to understand, navigate, and address CELS considerations of relevance to Indigenous Peoples to build trust, promote inclusion, and support equitable benefit-sharing in genomics research.
