December 10, 2020 at 11:00 AM EST, “Open Access” Data and the Continued Bio-Exploitation of Indigenous Genomes by Krystal Tsosie, Vanderbilt University. Hosted by ISCB
While the field of genomics has certainly advanced technologically in the past 20 years, what (if anything) has actually changed in how scientists engage Indigenous people?
Global Indigenous groups expressed concerns about the biocommercial exploitation of Indigenous-derived genomic data at the start of large-scale diversity projects such as the Human Genome Diversity Project, Genographic Project, and 1000 Genomes. Open accessibility of these data were meant to “democratize” the field of genomics to advance technology and bridge health inequities—but for whom? Health benefits have yet to arrive to those Indigenous communities from whom DNA was questionably procured, yet companies continue to build intellectual property from openly sourced Indigenous genomes.
Presentation will highlight individual versus group consent issues and the myth of de-identification of DNA for small, underrepresented groups in genomics. In addition, Indigenous genomic data sovereignty and the importance of Indigenous-led biological and data repositories (or ‘biobanks’) will be discussed as means of centering Indigenous forms of data governance.