Blockchain technology promises to transform data distribution via major advancements in data security and storage. Blockchain essentially connects digital accounts using cryptography, enabling verifiable transactions that can be openly shared on a highly secure, decentralized network.
For health care, the application of blockchain to the storage and retrieval of patient data, such as electronic medical records, could lead to improvements in data privacy, data interoperability and data usage. This could not only improve healthcare outcomes and services but also medical research.
In genomics, where individual data are not currently widely collected and where large data sets are imperative to classifying variants of unknown significance, blockchain offers a potentially transformative solution. In contrast to direct-to-consumer testing firm such as 23andMe, users are able to share their genomic data, control how it is used and do both anonymously. To preserve anonymity, in exchange for their data, users would receive “currency” redeemable for financial or other forms of compensation, such as health information and services.
In recent years, a number of companies have been formed to realize this goal and further develop blockchain for genomic data storage, sharing and analysis. In doing so, these companies aim to improve genomic data access to the users themselves, as well as researchers, drug developers and healthcare providers.
Established in 2017, Nebula Genomics has raised $4.3 million in funding, according to CrunchBase. Last year, the company launched nebula.org offering whole-genome sequencing in exchange for users answering a health-related questionnaire, which also earns them credits in the form of cryptocurrency. Researchers who want to access a user’s genomic information can pay to sequence it. Alternatively, a user can have their genome sequenced for $99, or upload their own data from sequencing services, such as 23andMe, and access that information as well as chose if and how it is shared. To further address this commitment to privacy, this fall the company launched an anonymous genetic testing offering. Users receive whole-genome sequencing and the results but without having to disclose their identity. Payment is made using cryptocurrency or a debit card, thus protecting the users’ personal information.
“By allowing individuals and large data providers such as biobanks to maintain ownership of their genomic data on our platform and profit from it, Nebula Genomics seeks to incentivize generation of genomic data,” commented Nebula Genomics cofounder and Harvard and MIT Professor George Church.
Nebula has partnered with pharmaceutical firm with EMD Sereno on a pilot project. The company is soliciting lung cancer patients to participate. Nebula is also exclusively working with health care data firm Longeneis to study how it is exchanged, with Logeneis contributing longitudinal information.
Like Nebula, Shivom is using blockchain to provide secure data exchange and storage with users controlling which of their data is used and how it is used. Shivom collects genomic data, either uploaded by users or submitted via its marketplace of genomic tests. The marketplace offers a variety of genomic tests for determining how one’s genome may impact lifestyle choices. Users pay for these tests and services using OMX tokens. This summer, Shivom introduced the MVP clinical SAAS solution for conducting genomic data analysis.
Established in 2017, the company raised $35 million in funding last year in an initial coin offering (ICO). In an ICO, in exchange for their funding investors receive the company’s bitcoin currency, whose value will rise as the company’s value does. Shivom cofounder and CEO Dr. Axel Schumacher told TechBullion, “[P]eople worldwide increasingly demand not only new practices, technologies, methodologies, business models and innovative approaches to the drug discovery and therapeutic remedies, but also greater oversight, management and control over their personal data and wellness/healthcare–and this is exactly what Shivom will is working on.”
Last year, the company announced a partnership with genomics analysis firm Lifebit, whose tools are offered on the Shivom platform for genome-wide association studies. Shivom has also entered into an agreement to integrate MVP with the AI platform SingularityNET, which will make Shivom datasets available to its users and vice versa.
EncrypGen introduced its Gene-Chain software in 2018, two years after its founding. It is designed as a website for purchasers and sellers of anonymous genomic data. Customers include researchers and drug companies. Payment is made in cryptocurrencies and data storage is free. The company claims that sellers receive 90% of the sale’s profit. The company reported $500,000 in angel funding and the subsequent ICO funding.
EncrypGen announced last year a partnership with business incubator Murrieta Genomics. At the time, Deepankar Roy, PhD, co-founder and science officer for Murrieta Genomics, explained, “So much crucial information currently resides in data silos that are owned and managed by health care organizations. Providing a platform like Gene-Chain can eliminate these silos and offer a free flow of information, all controlled over a secure blockchain.”
The company’s website currently lists ongoing study involving stomach ailments. EncrypGen also offers third-party testing services, most recently adding kits for wellness testing from clinical testing lab viazoi. EncrypGen has also recently added custom surveys to better match sellers and buyers.