Indigenous principlism in ELSI: Relational solidarity, data sovereignty and social justice

Despite promises to improve health disparities, genomics has thus far mostly failed to produce clinical and other palpable benefits for minoritized communities. There are multiple and distinct Indigenous ontologies, and shared across these entities is relationality, where humans are in relation with and inseparable from the land, atmosphere and waters, the flora and fauna, and the cosmos.
The Center for the Ethics of Indigenous Genomic Research (CEIGR), coordinated at the University of Oklahoma, is a national network pursuing community-based research on the ethical, legal, and social implications (ELSI) of genomic research for Indigenous communities in the United States. The CEIGR consortium has sought justice by centering Indigenous peoples, places, ways of knowing and doing in genomic research. CEIGR efforts, including tribal-led public deliberations, have been directed at the actions of the U.S. government agencies, academic institutions and private industry that have sought, intentionally or not, to misuse Indigenous peoples, places, and data.

Panelists are versed in interdisciplinary and community-based engagement approaches, though they each bring distinct expertise from their respective experiences in diverse fields of genetics, bioethics, anthropology, and public health. Panelists have collaborative experience working together over multiple years, both with each other and in collaboration with diverse Tribal community partners. Each panelist has participated in all of the initiatives being discussed, having each contributed to the conceptualization, design, execution, and dissemination of all efforts discussed as part of this panel. Our approach to community-engaged research involves the centering of Indigenous experiences and perspectives.

Authors: Vanessa Hiratsuka, University of Alaska Anchorage; Julie Beans, Southcentral Foundation; Christie Byars, Chickasaw Nation; Joseph Yracheta, Native BioData Consortium; Jessica Blanchard, University of Oklahoma; Paul Spicer, University of Oklahoma