Study Explores Use of Blockchain to Protect Indigenous Genomic Data

July 28, 2022 — Genomic information from Indigenous communities performs an necessary function in understanding an array of illnesses; nevertheless, this information has typically been used with out knowledgeable consent. A workforce of UC San Diego researchers—together with San Diego Supercomputer Heart affiliate Timothy Mackey—not too long ago proposed a framework to make the most of blockchain to make sure that Indigenous Knowledge Sovereignty (IDS) is maintained throughout well being information assortment, storage and sharing.

The researchers’ examine was revealed by the journal Cell in an article entitled Establishing a Blockchain-Enabled Indigenous Data Sovereignty Framework for Genomic Data.

“Our examine is the primary of its sort to mix the ideas of Indigenous Knowledge Sovereignty (IDS)—the correct of an Indigenous nation to control the assortment, possession and utility of information generated by its members—with the promise and potential of blockchain know-how to allow higher administration of health-related information,” stated Mackey, who’s a professor with the International Well being Program at UC San Diego and director of the International Well being Coverage and Knowledge Institute. “Although there are a number of commercially targeted initiatives to make use of blockchain to handle completely different types of healthcare information, none have targeted on the precise wants and distinctive cultural values of Indigenous peoples, nor purposefully designed a blockchain framework that makes IDS its central pillar of governance.”

Mackey defined that Indigenous populations are traditionally underrepresented in analysis, have a comparatively low diploma of European admixture and provide distinctive insights into genetic variants of curiosity. This information is essential to the way forward for biomedical analysis, one thing that has turn into much more evident as a result of COVID-19 pandemic and the necessity to guarantee inclusivity in biomedical and scientific analysis. He stated that the workforce’s analysis was impressed by work carried out by the Native BioData Consortium (NBDC) with the Cheyenne River Sioux Tribe.

“The NBDC has been useful to make sure that Indigenous Nations personal, management and profit from their genomic information,” stated Alec Calac, an MD/PhD scholar, co-author of the paper, and a member of the Pauma Band of Luiseño Indians in San Diego County. “Particularly, the NBDC, a first-of-its-kind non-profit Indigenous-led biobank and analysis institute, ensures that advances in genetics and scientific observe present materials or immaterial profit to Tribes like mine.”

Calac stated that the NBDC additionally hosts expertise coaching workshops for aspiring Indigenous information scientists. “Their work was the premise for us to evaluate if we might develop a blockchain framework that might improve governance over Tribal genomic information.”

Though blockchain was by no means thought-about as a viable resolution for information sovereignty points, this examine gives promise. “We’ve not too long ago submitted a grant utility to additional develop our framework and if we obtain funding, we are going to subsequent decide the technical elements of creating our system work within the real-world with an current Indigenous-led genomic biobank,” Mackey stated. “We plan to first seek the advice of with native Tribal communities, then refine our framework to the precise wants of the communities and the NBDC, and at last roll it out with a pilot model to evaluate its affect locally.”

Source: Kimberly Mann Bruch, SDSC Exterior Relations