Blockchain—The End of Privacy Concerns in Genomic Data Handling?
The blockchain currently is the go-to technology for digital privacy issues, delivering secure transactions without having to trust third-parties in industries as different as finance, real estate, health – and genomics. Already different companies are betting on the need, based on the expected phenomenal growth of genomic data, for blockchain-based securitization of data. Besides some hype about the connection of blockchain and genomic data, viable business models and how to integrate the technology into the existing healthcare industry are far from clear.
Why should it make sense to combine the capabilities of blockchain technology and genomic data? At first sight, it makes perfect sense. There is little doubt that genomics will play a big part in the future of healthcare by providing data for personalized health. In addition, it is estimated that the amount of human genomic data doubles every seven months, rivalling in the long-term the huge data amounts of nuclear physics and astronomy.
Apart from the needed storage capacities for this amount of data, privacy and secure handling are a major concern for businesses and private genome owners. Genomic data are very sensitive to many kinds of possible breaches and exploitations, from higher health insurance fees based on chronic diseases revealed by personal genome data to the unauthorized use of genomic data for commercial drug development.
What Does the Blockchain Deliver for Genomic Data?
Simply put, the blockchain is, in essence, a public, unhackable digital ledger of transactions of any kind. For example, no banks are required anymore for doing (crypto) currency transactions, and for example, all real estate transactions could be enacted by the blockchain without a middle-man. The key point of the blockchain, therefore, is the fact that it works trust independent, there is no third party that the buyer and the seller must trust, and the parties involved don’t even have to trust each other at all. The blockchain digital infrastructure provides a secure transaction system for the exchange of products and services. The most known ‘good’ traded currently on the blockchain are bitcoins, a cryptocurrency that started the blockchain boom some years ago. But there are already thousands of different currencies or ‘coins’ traded on digital marketplaces on the internet.
Crucially, the blockchain is a decentralized system that is distributed over many ‘nodes’, PCs or other IT infrastructures. There is no central institution that manages the system, but every node has a copy of all the transactions. In addition to the blockchain transaction technology, decentralization is a major theme also in other applications. Especially decentralized storage, for example, provided by Storj.io or the interplanetary file system (IPFS), is a forthcoming important application of decentralization.
How Blockchain and Decentralization Can Help Genomic Data Management
Together, blockchain and decentralized storage are a promising technology for managing and securing the genomic data deluge of the future. One way how this could work out is the following: sequenced genomes, transcriptomes or proteomes from different sources, research institutes, hospitals, sequencing companies or universities, are stored on a decentralized infrastructure like IPFS. Every personal genome file is then tagged or identified with a unique unhackable hash number for transactional traceability on the blockchain. The genomic data are not stored on the blockchain, but on a decentralized infrastructure, where no central institution or company has control over them. Only transactions in the broadest sense between different parties are then stored on the digital ledger of the blockchain.
Authorization by the Owner
What could possible genomic transactions be? If, for example, a research institute needs genomic data with certain properties for understanding the genetic conditions of a disease, they can issue a request to the genome holder who has stored her genome on the decentralized / blockchain infrastructure. The exchange of data between the genome owner and the research institute will then be recorded on the blockchain, and it is technically even possible to trace the use of the data later on. This exchange could even be paid by the institute, opening reimbursement opportunities for the genome holder.
From another side, a genome stored on the infrastructure can potentially also be accessed by other third-party services, for example, analytics companies providing specialized analysis for well-being (nutrition, microbiome) or specialized medical analysis. This could even be done without direct access to the data, assuring the privacy of genomic or health data. Crucially, all operations and transactions on personal genomic data must be authorized by the owner, so, ideally, there should be no unintended use and dissemination of genomic or health data anymore. How this can be assured in practice technically, is one of the big challenges blockchain genomics companies are facing.
The Complex Health Industry Reality
As a general concept, the blockchain offers without a doubt a valuable technology to manage and transact genomic data without compromising privacy. Yet the crucial fact will be for every company active in the field, how to mould this technology into a valuable and scalable business model. Technology is only part of the equation. Today, genomic data are generally widely disseminated between a plethora of institutions from hospitals, universities, research institutes, sequencing and analytics companies to private storage. Technology or a happy ICO alone (ICOs are the blockchain equivalent of an IPO in the financial world to raise money) are not enough to have a valuable business model in the complex health industry landscape.
The challenge will be to fit the blockchain technology into the genomic and health landscape in general, as well as into the health systems of different countries. To this date, the business models of genomic blockchain companies are mostly similar, with slight variations in different directions. Yet time will tell which business model can be expanded and refined until it is most suited to establish the blockchain as a technology to support our genomic future for the benefit of everyone.
Companies Active in the Field
New to Blockchain?
Blockchain is the single most confusing term since Bitcoin, but everyone seems to have a ‘vague idea’ of what it does. Here’s a guide for total beginners, that might be useful if you have just a ‘vague idea’, or maybe no idea at all.
*Alex Schmid is a co-founder of MyGenomeBank, a blockchain genomics company based in Switzerland.