According to a report by Zion Market Research, the global genomics market is expected to be valued at around USD 41.2 billion by 2025. This report cites growth in the number of genomics research projects, declining sequencing costs, expanded genomics applications, and increased activity in drug discovery and molecular biology as among the main factors fueling the global genomics space.
With the rise of collaborative partnerships between research institutions and companies along with increased attention directed toward personalized medicine, new advancement opportunities abound. Amid these promising developments, however, are growing concerns surrounding private genomics companies whose sole intent is to sell data for research and commercial purposes. This process has the effect of exploiting consumer data for profits.
Where Blockchain in Genomics Come Together
Today, a new movement impacting consumers and their genetic data is garnering worldwide attention. At the epicenter of this activity is Encrypgen, the world’s first genomic data marketplace.
This state-of-the-art blockchain network delivers a world-class, next-generation ecosystem for the sharing, protection, and re-marketing of genomic data. As a blockchain in genomics applictaion EncrypGen seeks to give people control over their genomic data, allowing them to share information and profit from the transaction.
Powered by the blockchain, consumers can safely and securely upload their raw genomic data file on Encrypgen’s Gene-Chain. The company’s security-centric model is seen as a major advancement during a time when data privacy issues have impacted prominent genetic data repositories such as 23andMe and Ancestry.
The DNA of Encrypgen Launch
The first demo of EncrypGen took place in 2017 at the Bio-IT world expo in Boston, with the official launch taking place in 2018. During this time, Encrypgen converted from its original multichain platform to the Ethereum ECR20 token, a move that allowed users to monetize their genomic data.
Token value is derived from the sale of genomic data to licensed institutions. This data is privately and securely stored on the Gene-Chain. Once uploaded, researchers in need of a diverse set of genomic data can purchase the data directly from consumers with the latter’s consent. Consumers then get paid for supporting research around better treatment and cures through the sharing of these DNA results.
For the Love of Science (and Philosophy)
Asked to share his thoughts on the genesis of Encrypgen, co-founder and CEO David Koepsell had this to share:
“I grew up at the tail end of the space age, fascinated by the Apollo program, Skylab and the Space Shuttle program. And being that I was an early adopter of computers, my interests in that realm inspired my views about the role of distributed computing in science.”
He says that the U.S. decline as a space-faring nation as well as the gradual de-funding of big science, culminating in the failure to complete the Superconducting Super Collider, helped push him toward new views on how big science could be done.
“I carried forward my computing interests in law school and while getting my Ph.D. in Philosophy. This led me to begin thinking about networks and the distribution of computation on a grand scale, as well as about the nature of “cyberspace.”
Koepsell’s Ph.D. thesis became the book The Ontology of Cyberspace, which was one of the earliest works on the emerging medium of the Internet. After teaching ethics and technology for some time in Holland, he moved to Mexico with his family where he became interested in combining his varied interests in science and distributed computing. This led him to pursue cryptocurrency mining as a hobby, paving the way to working with his spouse to create something practical for science and regular people to control their health data.
Says Koepsell: “Dr. Gonzalez is also my wife. She and I have been writing together on issues of genomics and policy for more than a decade. Most recently, before forming Encrypgen, we co-authored some academic pieces regarding genetic data and privacy.”
He says that the two of them harbored growing concerns over the tension between the scientific need for more and more data to do basic and potentially life-saving care, and the increasingly worrisome issue of third parties and the re-identification of genetic data using public data. This latter tendency, he notes, is highlighted by the recent use of publicly available data on the part of law enforcement to find suspects in decades-old cold cases.
“My wife (Dr. Gonzalez) is the scientist, and I am the professional philosopher who has long written on and lectured about ethics and technology. But as a computer nerd who had been playing with cryptocurrency mining for a while, I saw that there was nexus, one that led us to the question of whether we might be able to solve the problems we had been writing about with technology.”
In terms of the philosophical underpinnings of his work, Koepsell says he’s long been interested in questions around the existence and nature of rights.
Says Koepsell: “Much of my work as a professional philosopher has involved dealing with this problem. All three of my philosophical monographs have been attempts to tackle our relation to objects, types, tokens, artifacts, and ideas with a view to understanding how those relations might derive from or create rights of some kind,”
Koepsell admits that he eventually came to a point in the course of that argument that rights over tokens, or the physical manifestation of ideas, were grounded in brute facts, or the very nature of the relations of people to things. Meanwhile, rights over ideas, he says, were not. This led him to come out against intellectual property, but strongly in favor of property rights.
This, he says, extends to our own bodies.
“Our claims to the use and profit from our own bodies, including its data, are similarly grounded. Ultimately, the data should be free to use for science, and markets are best at creating incentives for the remuneration of the use of data at fair market prices. So this ethical and ontological backgrounds leads necessarily to the sort of model we adopted with the Gene-Chain.”
Charting The Path Ahead
In terms of Encrypgen’s future, Koepsell notes that the direct-to-consumer testing market according to Koepsell is enormous.
“Nearly 20 million people worldwide will have been tested by 2020. The size of the genomics market as a whole is estimated to soon reach 20 billion USD worldwide. Most of the money being made is in testing and the use and application of basic research to new treatments and drugs.”
He goes on to say that money has been made on the backs of those who have done mostly recreationally, direct-to-consumer testing without fully realizing that their data is often sold to companies by the testers for use in that research, sometimes for millions of dollars of curated data sets.
Asked about Encrypgen unique solution to this knotty issue, Koepsell remarks:
“Our marketplace removes the barriers to paying the individuals whose data is being used, and the bottleneck posed by the fact that the DTC testing companies have been monopolizing the data selling market and thus setting their own prices. As well, there is a significant need for more data from non-white Europeans whose samples to date have dominated this market.”
He concludes: “An ultimate goal of ours is to spread the wealth of data use by rewarding people in the developing world, offsetting the costs of testing and putting much need wealth in their hands, while helping to diversify genomic science.”
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