Frontiers of Bio-Decolonization: Indigenous Data Sovereignty as a Possible Model for Community-Based Participatory Genomic Health Research for Racialized Peoples in Postgenomic Canada

Abstract

This paper explores the manners in which Indigenous and allied non-Indigenous researchers, medical directors, and knowledge-keepers (among others) extend the ethical precepts and social justice commitments that are inherent in community-based participatory research (CBPR) approaches to genomics. By means of a genealogical analysis of bioethical discourses, I examine the problem in which genomic science claims to offer potentially beneficial genetic screening tools to Indigenous and racialized peoples who have and continue to struggle with historical health inequity, exploitation, and exclusion by the very biomedical institutions which would be charged with the task of ethically introducing these biomedical tools. This investigation focuses on Indigenous data sovereignty (IDS) as an approach established by Indigenous communities and scientists to gain access to the benefits of genomic health which, if the field’s promises are true, aims to counter the historical neglect or exploitation by biomedical researchers and institutions. I chart the role of CBPR principals as it pertains to collective efforts by both Indigenous communities and non-Indigenous allies to create the social, biomedical, and institutional conditions to improve Indigenous health equity in the context of genomic science in two specific studies: the Silent Genome initiative (British Columbia) and the Aotearoa Variome (Aotearoa/New Zealand). This investigation contributes insights to social science literatures in health equity for racialized communities, biomedical ethics, Indigenous Science and Technology Studies, and decolonial biomedical and technoscience histories.

Precision health equity for racialized communities

“…These include the balance between individual and group rights over genetic data. Because experiences with the unauthorized secondary use of collected biological samples in past genetic research has discouraged racialized communities from participating in genetic studies, the ownership of genomic data and its governance are also crucial issues relevant to including racialized communities equitably in precision health [11][12][13][14].…”

“…Knowledge of events like these, and others, circulate within racialized communities also which augment their distrust of human genomics research [24][25][26]. (While differences between Indigenous and racialized communities must be acknowledged, we also see an opportunity to draw on the insights of scholars working on decolonization and racialized settlers on Turtle Island/North America who suggest that effective racial and social justice enterprises need to recognize the parallel, though not identical, encounters withcolonization and health disparities which often follow as lived realities for both racialized and Indigenous peoples [14,27]).…”