Published by Sophie Sheldon, Supervising Associate, Simmons & Simmons and Lydia Torne, Managing Associate, Simmons & Simmons on 14 August 2018
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21 August 2018
In today’s data-driven economy, data is king; companies like Facebook and Google monetize your digital-data footprint. The genomics space is rapidly evolving in an unsurprisingly similar fashion, not without controversy. Personalized genomics companies such as 23&Me charge their users (~100$ per SNP test, not whole genome sequencing) and provide information on their predisposition to disease.
This information stored by 23&Me; both clinical and biological, is valuable for pharmaceutical companies as it can aid in understanding the underlying biological mechanisms causing disease. Healthcare is progressively becoming a data-hungry industry as classical data-companies such as Google’s parent company Alphabet, Amazon and Alibaba are entering this space. As these companies begin to tackle complex diseases, they will want access to large scale datasets to train machine learning algorithms.
This need for data means that companies are prepared to pay a premium for access to such rich-genotypic information. Recently, GSK invested $300 Million in 23&Me for an exclusive license to their informational database and previously 23&Me inked a $60 Million deal with Genentech. The race is now on to gather large biological and clinical datasets with China and the UK sequencing significant cohorts in their population.
With the convergence of cheap genome sequencing, high demand for multi-omic information associated with phenotypic data, there is a market for multiple companies like 23&Me to be data brokers (extensive list here of available services), with ever increasing concerns around genetic discrimination and privacy breaches.
In order to address the lack of data and increasing privacy concerns, there are companies that allow users to share and monetize their personal genomic information (Heterogenous, LunaDNA). These companies serve as an intermediary for trading your personal information.
As with other data-sharing industries, the (Distributed Ledger Technology) DLT offers an interesting opportunity to use blockchain as a safe – data broker for multi-omic data. The emergence of companies such as Nebula, Shivom, Longenesis, DNAtix and Genecoin demonstrates an appetite within the industry for a decentralized repository for multi-omic data. (Read more about the companies in this space in this article)
What is the value of the distributed ledger technology to sharing genetic data? As opposed to a normal database, blockchain offers a couple of unique offerings beyond a basic data aggregator.
In order to better understand disease, biologists are looking to gather information across a range of diverse populations and need lower barriers to accessing previously inaccessible biological information. DLT offers a global solution for genomic data banking, by allowing for easier storage of genomic information and better methods for compliance to health-data sharing standards.
Secondly, data-as-a-marketplace on the distributed ledger is being used by other industries. Using this business model for the genomic industry can allow users to only share information with researchers or companies they are interested in, but also allow global payments, avoiding challenges with the classical payment infrastructure. Leveraging cryptocurrency, it will be possible to build a truly international, genomics database without any global restrictions.
Blockchain offers a method to allow people all over the world to share their valuable healthcare data at lower cost in a fashion that they can control. This in turn means better access to richer, powerful healthcare data (both clinical and genetic) for companies to truly make an impact on the challenges in medicine today.
Rabia Khan, PHD, MBA, Founder, Stealth Mode