Indigenous perspectives on biobanking, specimen storage, and data governance: A scoping review.

Abstract

Indigenous Peoples' concerns about how researchers collect, store, and use biospecimens have limited their participation in biospecimen-based research. Researchers must improve biospecimen governance to address these concerns and advance ethical research and data practices. In this study, we seek to better understand Indigenous Peoples' perspectives on biobanking and biospecimen storage in Canada, Australia, New Zealand, and the United States. PubMed, EMBASE, Nature Online, Scopus, Academic Search Complete (EBSCO), JSTOR, and Project Muse were searched using terms related to the peoples, populations, and topics of interest. A two-stage screening process assessed relevance, followed by inductive content analysis to identify key themes. Articles were included if they reported on Indigenous Peoples' perspectives or governance approaches related to biobanking or genetic research. Seventy articles published between 1988 and 2023 met the inclusion criteria, with nearly 70% led by Indigenous authors. Six themes emerged: informed consent, biospecimen stewardship, data sharing policies and expectations, research benefits and risks, Indigenous participation in research, and community engagement. The review highlights perspectives and governance approaches that guide ethical research, protect community rights, and oversee the use of biospecimen and related data. Findings underscore the need for Indigenous-led governance frameworks that center Indigenous sovereignty and community-defined values.