Personal genetic data as non-fungible tokens on layer-2 Ethereum to enable self-governance and incentivized exchange

Personal genetic data as non-fungible tokens on layer-2 Ethereum to enable self-governance and incentivized exchange

PI: Dr. Ruibang Luo, HKU
Co-I: Prof. Tak-Wah Lam, HKU

Project Abstract: 

Over 50 million personal genomes were sequenced in the past decade through direct-to-customer DNA tests, such as 23andMe and AncestryDNA. However, under the current practices, the customers have no way of knowing where their genetic data goes or how it will be used. This lack of transparency has had consequences, from disincentivizing participation in programs that would benefit from sharing health or genetic data, to driving a profound lack of genetic diversity in clinical trials. A new model is needed for personal genetic data governance and exchange. We believe that a blockchain tool, leveraging non-fungible tokens and zero knowledge rollups to the Ethereum mainnet, would enable a degree of transparency, traceability, and profitability to allow individuals to actively control their own genetic data. In this proposal, we will design and implement such a blockchain tool, and test it with 2,800 personal genomes from our Chinese Genome Database. We will study what critical and optional genetic information should be stored and the tradeoff regarding whether it is either on-chain or off-chain. We will implement and benchmark smart contracts for actions such as insert, query, and modify. We will show how individuals could join pharmaceutical research projects spontaneously and anonymously and be rewarded.

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