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Healthcare providers currently sell anonymized form of your DNA data to pharmaceutical companies, but you don’t make any money out of it. Thanks to blockchain-powered DNA data marketplaces, that will change.
When a healthcare provider conducts DNA testing for you, you pay for the tests. That's one revenue stream for that healthcare provider, but not the only one. Potentially a larger revenue stream for the healthcare provider is selling a de-identified form of your DNA data, i.e DNA data that doesn't have attributes to identify you, to other healthcare providers and pharmaceutical companies. You make no money out of this transaction, and you may not even know anything about the transaction at all. Sounds like a raw deal? It certainly is, considering that you have already paid for the tests, and control nothing over what subsequently happens to your data. But then, whenever middlemen are involved, there is a possibility that the consumer may get a raw deal. The healthcare provider that conducted your DNA tests is that middleman when your anonymized DNA data is sold later, in this case pocketing the entire revenue from the transaction.
Why is selling DNA data a lucrative business? To understand this, let's first take a look at why DNA data is important. Genetic information for living organisms is contained within Deoxyribonucleic acid (DNA) and Ribonucleic acid (RNA). DNA and RNA are made up of nucleobases, the sequence of which determine the physical characteristics of the organism. The essence of the important science of genetic sequencing is actually identifying this sequence. The sequence contains important information, which the researchers working towards identifying genetic changes use. Armed with this information, the researchers then identify associations of these genes with various diseases. It's at this point that this becomes vital information for pharmaceutical companies that need to identify targets for the drugs they are developing. As you can see, your DNA data is really important for big pharma!
Is there a way for you to gain control over your DNA testing data, eliminate the middleman, i.e. the medical provider that did the testing, from the value chain, and directly sell your DNA data to the big pharma, in a secured manner? As you have clearly identified by now, both aspects, i.e. the elimination of middleman, as well as security, are important for you. You don't want your DNA data with your name available everywhere on the Internet, do you? Is there a technology that can do this job for you? The answer is “Yes” and the technology is blockchain.
Blockchain, also called “Distributed Ledger Technology” (DLT), is a distributed database, where the information is maintained in a shared manner by all computers, also called 'nodes', in the network. At any given point in time, all nodes have the full and latest information available in the blockchain, and this is why nodes are also called ledgers. Updates to blockchain need not be routed through any designated central point of authority. Every node on the blockchain is an equal point of authority, i.e there is no middleman in blockchain. It's also very secured, because of the way in which blockchain is updated. A block record, or 'block', in the blockchain can't be deleted, neither can it be modified. The only way to update the blockchain is to create new block. The process of creating a new block is commonly referred to as “Mining”, a term you may have heard in the context of the famous cryptocurrency Bitcoin, which has been created using the blockchain technology. A “Miner” is a combination of specially designed hardware, special-purpose software, and their user. Miners work to create new blocks in the blockchain, and get rewarded when they create a new block, making the process of mining intensely competitive. To create a new block, a miner has to solve a cryptographic puzzle, i.e. run massive number-crunching operations in quick time, in a highly competitive environment. Only when the miner is able to provide proof of work (POW) in the form of the last recorded block in the blockchain, then he can create a new block. Consensus mechanism of blockchain ensures every new block added is validated by majority of the nodes through this complex process, and this makes every information on blockchain mathematically proven. Hacking blockchain is not at all economically viable.
At this point, you might be wondering whether anyone has leveraged this promising blockchain technology and created a solution for you to sell your DNA data. The answer is “Yes”, and below we summarize for you 3 blockchain-powered DNA data marketplaces offered by 3 companies:
David Koepsell is CEO of Encrypgen, Alexey Gorbachev had founded Zenome, and Luna DNA is founded by Bob Kain and David Lewis. All 3 companies had successful Initial Coin Offerings (ICOs) for their respective cryptocurrency tokens. Conceptually, their work of bringing the individual whose DNA data it actually is, into the center of the value-chain, is quite similar to the work done by an Israel-based technology company, Proof Work. Proof Work is working on giving the patients the control over their Electronic Medical Records (EMRs), the control the patients currently lack, using blockchain technology.