The Genesy Model for a Blockchain-Based Fair Ecosystem of Genomic Data

Abstract

Recent advances in technology have drastically downsized costs and implementation times for genomic services. The wide availability of low-cost genomic technologies and easy access to genomic data can significantly improve healthcare productivity and efficiency, all to the benefit of social well-being in general. For example, by creating the conditions for researchers to identify the causes of multiple diseases and contributing to the development of new drugs, we can improve the quality of life and give people, as users of genomic services, the means to positively impact their health. This article describes how blockchain technology can lay the foundations of an ecosystem that encourages users to acquire and share their genomic data in full awareness without fear of being circumvented to participate in the benefits and advances in genomic research. The starting point is Genesy, an innovative blockchain platform that transcribes genomic data, thus facilitating and, at the same time safeguarding, the users of genomic services in their relationships with parties interested in accessing and using data they own, such as research centers, pharmaceutical companies, hospitals, and geneticists. This result is obtained by exploiting blockchain technology's capabilities to notarize data and prevent their unauthorized use, and at the same time to make them objects of possible transactions between different parties. Looking ahead, the Genesy model can be generalized to promote an ecosystem, and a fair market, for all types of biomedical data.

Blockchain for Genomics: A Systematic Literature Review

“…The company does not provide any other motivation for genomic data collection rather than claiming to only gauge interest in this service in their website [47]. Genesy [20] Private blockchain based on HyperLedger Fabric…”

“…Genesy [20] aims to encourage data owners and organizations to collaborate by providing an ecosystem for managing the exchange and access to genomic data. Genesy provides sequencing services and the ability to sell access to generated data.…”

“…In addition, enforcing an access policy by utilizing smart contracts is another motivation for employing blockchain. For example, [20] relies on smart contracts to allow access to the data and transfer the payment to the data owners.…”

“…Another notable off-chain storage technique, employed by Genesy [20] and CrypDist [98], is to use cloud storage and linking the data to the data owners through cryptographic pointers stored in the blockchain. A transaction is created with every file containing a hash pointer to the data on the cloud.…”

Blockchain and Cryptocurrencies: a Classification and Comparison of Architecture Drivers

“…Genesy is an innovative blockchain platform which acts as an intermediary between the owner of the genomic data and its potential users (i.e., university research centers, private laboratories, hospitals, geneticists, etc.). 8 It envisions the use of blockchain, cloud computing and artificial intelligence as means to structure a new ecosystem that ensures the user's exclusive property and access to their genomic data, but also the possibility of participating in the benefits of the genomic research. The aim of Genesy is to involve collaboration among users and various organizations to promote a high-level genomic ecosystem, thereby efficiently collecting and managing the large volumes of data produced in DNA sequencing activities.…”