The DNA revolution is on the way. Thanks, largely, to the reduction in the cost of DNA testing and sequencing, getting tested is growing in popularity. The trend isn’t just popular among consumers interested in their ancestry. The scientific research and pharma communities are spending hundreds of millions of dollars to buy genomic data to understand how various genes react to different drug therapies, and that means your genomic data could be going to the highest bidder.
For years, researchers and pharmaceutical companies have been buying genomic data from the very same companies consumers are paying to get their DNA tested. That’s good for science and that’s good for the testing companies, but what does that mean for you? It means you are more than just a cash paying customer to the testing companies, you are also a data source that is helping supply them with their most profitable product…your DNA data, and that is what sparked the revolution. Leading the charge is Dr. David Koepsell and Dr. Vanessa Gonzalez Covarrubias, Co-Founders of EncrypGen. David has a background in law and ethics, having authored multiple books and articles on genes, ownership and ethics. Vanessa is a pharmacogenomic scientist researching the foundational science behind the nascent field of personal medical genomics. As husband and wife and business partners the two had a vision for a platform that would put consumers back in control of their own personal genomic data and would develop a marketplace of depersonalized DNA data profiles the research community could tap into to advance science and medicine to improve the efficiency and effectiveness of healthcare.
EncrypGen is paving the way for a new wave of companies that are poised to disrupt the old model and tip the scales in favor of the consumer/DNA data holder by putting them in control of their personal genomic data and allowing them to be paid for sharing their DNA rather than surrendering it to the testing companies who have been capitalizing on it.
This new generation of blockchain startups is utilizing blockchain technology, which will allow consumers to securely store and manage their genomic data and decide whether or not they want to share it. Those that opt to do so, can, thanks to a tokenized blockchain marketplace that connects data sellers with data buyers.
By definition, a blockchain is a decentralized database which isn’t controlled or owned by a single party. As such, data is more secure than it ever could be when it is stored on a single controlling system. Furthermore, the blockchain connects all parties in an ecosystem, in this case, a genomic marketplace where buyers and sellers can find and connect with each other.. The most notorious example of this technology is the Bitcoin blockchain which allows speedy international money transfers with minimal fees, among other benefits. Other examples include SteemIt, a blockchain-based social media website and Ethereum, a platform that allows creators to invent new blockchain projects. Other projects in the works include blockchains allowing musicians to release music without record labels and networks that’ll allow passengers to find taxi drivers without either party having to fund a third party like Uber.
Blockchain is perfect for DNA storage and sharing, because of the added privacy this platform provides. The decentralized nature of this technology means there is no single database for cyber-criminals to compromise. What’s more, all transactions are stored on an immutable ledger, meaning users can see exactly where the data has been shared. EncrypGen is utilizing the blockchain to build the world’s first marketplace for data owners to sell their genomic data, and it will use smart contracts to ensure that no-one can access your data without your permission. The security of genomic data has been called into question in recent times, with many commentators suggesting that the improvements in genomic testing will make this data more valuable to cyber-criminals.
Mainstream DNA companies store your data in traditional databases, using security practices not too dissimilar from those used by financial companies like Equifax, or communications companies like Yahoo!, both of whom have been subject to huge data breaches in recent times. What’s more, it’s often unclear which third parties these mainstream companies are sending your data to and whether or not those parties will resell it. The introduction of blockchain and smart contract technology will help put both of these concerns to bed.
The value of your genomic data will be based on supply and demand, just as it is in the current model where it’s sold by DNA companies to third parties. Under the current monopolistic model, companies sell your data at inflated rates to researchers and that expense drives up the cost of drug therapies. With the volume of data that is being made available now, we expect the marketplace to buy the data will grow, and that the cost of data will lower for buyers. EncrypGen will provide the benefit of putting data buyers and sellers in direct contact, to do business with one another anonymously and securely, and with direct monetary benefit to the sellers.
The data suggesting what the current market value of your DNA could be is sparse. It has been estimated that 23andMe has made $130 million by selling 1 million genotypes to pharmaceutical companies. This adds up to $130 per submission. Customers of DNA sequencing company Genos are reportedly being paid between $50 and $200 for their samples, depending on demand from scientists. Another report states that sources close to a 2015 deal between 23andme and Genentech, said the U.S. arm of Swiss pharmaceutical giant Roche, offered to pay as much as $60 million for access to the data of about 3,000 patients with Parkinson’s disease in 23andMe’s database. That deal puts a value of $20,000 for each of those data sets.
While some consumers may choose to simply donate their anonymized DNA data to science to help advance medical research others may want to monetize it themselves, rather than allow the testing companies to capitalize off of the data consumers supplied. While it’s still difficult to pinpoint what the value of your genomic data will be on the marketplace, it’s clear that the scarcity of your type of genes and how they match the profiles sought for specific studies will surely play a huge role in how much you could charge for sharing your data on the blockchain. For example, if you suffer from a rare health condition, or if you’re 100 years old and healthy, there’s likely to be more demand for your DNA, meaning pharmaceutical companies will be likely to pay more for it. Could these rare genes be sold for thousands of dollars? It’s certainly not out of the question. As genomic research improves and scientists are able to learn more from a sequenced genome, it’ll increase in educational value to them, and , therefore, could increase in financial value too.
Research indicates that people will be more likely to share their genomic data if they can guarantee their privacy, retain ownership of their data and have greater control over how it is shared. The introduction of blockchain technology will allow these desires to become reality.
Not only will consumers who have had their DNA tested be able to share their depersonalized data using a more reliable, robust genomic repository, but they’ll also end up with some extra cash in their pockets. While it remains to be seen how much consumers will actually be able to make, there’s enough evidence and competition popping up in the industry to suggest that this is a developing market worth getting excited about.
The mass of new data that the lower cost of testing and the security and efficiency of storing and sharing genomic data on blockchain platfoms could produce will speed up and help scientists to improve healthcare at a faster pace than ever before.
What’s more, when using the Gene-Chain, EncrypGen’s tokenized blockchain ecosystem, consumers will have the ability to learn valuable information about their health and heritage, through partnerships with genomic product and service providers who respect customer privacy and ownership rights of their own DNA, and will then have the ability to decide if they want to offer it to the research community.. It really is a win-win for consumers, researchers and pharmaceutical companies.
Click the link to learn more about how EncrypGen can help you share your DNA securely and make money in the process.
Image credit: Photo by Tatiana Maramygina on Reshot