The Illusion of Inclusion: Large Scale Genomic Data Sovereignty and Indigenous Populations

Raw genomic data has emerged as a top global commodity in the the past several years. This shift is so new that data science experts are still evaluating what such information is worth in a global market. In 2018, the direct-to-consumer genetic-testing company 23andMe sold access to its database containing digital sequence information from approximately 5 million people to GlaxoSmithKline for 300 million dollars. Clearly there is a growing market for these products and like a goldrush, organizations are seeking to find rare samples to package up for analysis and reward. Indigenous peoples are legitimately concerned about the potential for commodification of drugs derived from research on their genomes, and as a consequence, they are sometimes reluctant to participate in genomics research. All of Us, a program of federally funded investigators are interested in recruiting participants from native groups, but given the fraught history of genetic studies involving Indigenous peoples - including examples such as the Havasupai v. Arizona State University, in which the tribe successfully sued the university for improperly using its members' blood samples - tribal communities continue to be wary about participating in the federal government's newest endeavor. Here I contextualize data sovereignty issues and identify strategies to create equity in federal government genomic data collection efforts.