Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics

Abstract

The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types to conduct rapid diagnostic and antibody testing, often based on proprietary technologies specific to the novel pathogen. They also partnered with public-private enterprises on clinical trials to further the development of vaccines. Indigenous people contributed biological samples for assessment and, in many cases, broadly consented for indefinite use for future genomics research. A concern is that the need for crisis aid may have placed Indigenous communities in a position to forego critical review of data use agreements by tribal research governances. In effect, tribal nations were placed in the unenviable position of trading short-term public health assistance for long-term, unrestricted access to Indigenous genomes that may disempower future tribal sovereignties over community members' data. Diagnostic testing, specimen collection, and vaccine research is ongoing; thus, our aim is to outline pathways to trust that center current and future equitable relationship-building between tribal entities and public-private interests. These pathways can be utilized to increase Indigenous communities' trust of external partners and share understanding of expectations for and execution of data protections. We discuss how to navigate genomic-based data use agreements in the context of pathogen genomics. While we focus on US tribal nations, Indigenous genomic data sovereignties relate to global Indigenous nations regardless of colonial government recognition.

Leading Canadian Nurses into the Genomic Era of Healthcare

“…Accelerating the integration of genomics into practice will enable nurses to fully participate in the creation of care pathways, education and research. Canadians have unique equity issues, particularly among Canadian Indigenous populations, that must be understood and addressed during efforts to integrate genomics into healthcare (Haring et al 2021;Hudson et al 2020). Creating made-in-Canada innovations that are developed through engagement and collaboration with diverse populations will ensure that nurses have strategies that reflect the Canadian education and healthcare context.…”