Inclusion without equity: the need to empower indigenous genomic data sovereignty in precision health

Abstract

Indigenous people constitute the lowest represented ethnic minority group in most genomic and precision health research studies. However, most efforts to increase engagement of Indigenous people have been problematized in terms of increasing recruitment but without correcting past research practices deemed extractive by Indigenous communities. For instance, recent efforts to increase engagement of Indigenous people in research are tied to increasing “inclusion of diverse populations” but with vague promises of someday leading to future innovations in genomics and precision health. Yet, structural barriers and lack of preventative healthcare contribute more proximally to gaps in health disparities and are unlikely to be addressed by indeterminate advances of precision medicine in Indigenous communities. Merely increasing inclusion of Indigenous people in precision health research without also expanding decision-making agency and equity is effectively misusing “inclusivity” as a guise for continued extractive work. Empowering Indigenous-led biorepositories enables participation and tribal oversight, but still facilitates research under tribal oversight that is more culturally consistent with Indigenous models of consent. Change is needed to build trust and encourage tribal participation in precision health research. Empowering Indigenous genomic and data sovereignty is the path forward for truly increasing health equity.