Blockchain gives Indigenous Americans control over their genomic data
“[This model will] ensure each Indigenous Nation can control access to their members’ sensitive health information and prioritize research that is linked to community priorities,” say the authors, including senior author Keolu Fox, a genome scientist at the University of California San Diego.
“[Existing solutions] may indirectly enable the continued exploitation of Indigenous Peoples’ data in violation of Indigenous Nations’ rules and regulations,” the researchers wrote. “Innovations in digital health now focus on putting the patient and their values at the center of a collaborative design approach.”
The authors acknowledge that the framework is still in the early stages of development, and they need to consult more Indigenous leaders and communities to refine the framework to suit the specific needs of Indigenous peoples. But they believe that it is a starting point for the communities to take back control of their genomic data.