Blockchain gives indigenous peoples control over their genomic data

Scientists today can access genomic data from indigenous peoples without their free, prior and informed consent, leading to potential abuse and reinforcement of stereotypes. Despite existing tools that facilitate the sharing of genomic information with researchers, none of these options give Indigenous governments control over how this data is used.

In an article published in the journal Cell On July 21, authors propose a new blockchain model in which researchers can only access genomic data after the indigenous people have approved the research project.

“[This model will] ensure that each Indigenous nation can control access to its members’ sensitive health information and prioritize research that is tied 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 data in violation of Indigenous 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 with more indigenous leaders and communities to refine the framework to fit the specific needs of indigenous peoples. But they believe that it is a starting point for societies to take back control over their genomic data.