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

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