When a hospital or healthcare facility collects genetic data from a patient, it’s subject to what’s called the Health Insurance Portability and Accountability Act, or HIPAA. Essentially, this severely restricts and limits the way that the healthcare providers that collected the data can use and share it, allowing individuals to retain a degree of privacy.
What many people don’t realize, however, is that with the rise of do-it-yourself DNA testing kits, this privacy is being seriously undermined.
Ancestry sold 1.5 million DNA test kits between Black Friday and Cyber Monday. When people submit their DNA to companies like Ancestry, they are agreeing to various terms and conditions that basically allow the company in question to share the data generated with whatever and whoever they want, and store it in ways that sometimes result in breaches like the one after Christmas that leaked data of 300,00 users ( https://www.komando.com/happening-now/435921/ancestry-com-suffers-big-data-leak-3 00000-user-credentials-exposed ). For these companies, your genomic data is regarded as a company asset, meaning that Ancestry is essentially claiming ownership of the genome of those 1.5 million users of its test kits.
That’s a big problem.
So how is this problem solved?
One company thinks it has the answer – EncrypGen.
EncrypGen is harnessing blockchain technology to return the ownership of genomic data to individuals and to empower you to control who and what gets access to your data no matter who provides your tests.
Blockchain technology is quickly becoming the gold standard ledger and database tool in practically every corner of the global industry. It’s being applied to things like cloud storage, manufacturing, education and more. EncrypGen, however, is the first company to take this technology and use it in genomics.
The company’s lead product is called Gene-Chain and it is intended to mediate the searching, storing, buying and selling of genomic data. For anyone that knows how a blockchain works, the concept will be relatively clear. For those new to this sort of technology, a blockchain is a secure ledger that allows for the recording, time stamping and – critically – encrypting of data of any type.
When data is added to a blockchain, it’s recorded in a block along with other data, which is then encrypted and hashed. The hash means that the data can’t be tampered with or altered once it’s secure on the chain. Nodes on the blockchain constantly verify new blocks and maintain the integrity of the ledger against hacking and tampering.
What EncrypGen has done with Gene-Chain, is take this concept and created a secure database (blockchain) of genetic data. Anybody can store their genetic data on the Gene-Chain securely and, once it’s in the database, can control access to the data they’ve created and stored. They can also be reimbursed for its use through the Gene-Chain’s native cryptocurrency, aptly named DNA.
For example, imagine a woman who has her genetic information stored on Gene-Chain wants to allow a physician to see the data and use it to diagnose a condition or as the basis of a treatment. All she has to do is use the EnrypGen application (which can be accessed on pretty much any internet connected device) to grant the physician access to the data she has stored.
Now imagine the same woman wants to sell her genetic data to a research laboratory that wants to aggregate it with the data of other individuals to inform the design of a new drug. She grants access to the laboratory and the latter pays her for the privilege. And the best part? Her data is anonymised so it cannot be traced back to her!
Never before have people been able to take control of and monetize their own genetic data in this way. In this regard, Gene-Chain really is a first-of-its-kind application of blockchain technology to genomic science.
And the exciting thing is that this technology is real and it’s here now. The company was founded back in December 2016, funded back in July in part by way of a very successful token sale and started co-selling DNA test kits ( with Codigo46) in December 2017. In Jan 2018, the MyGene-Chain customer portal opened for genetic data uploading.
And what’s next?
EncrypGen is set to launch Gene-Chain Lite in Spring 2018. This is essentially a pared-down iteration of its primary technology. The full version, Gene-Chain V1 for heavy users, will go live in April.
The bottom line is this: in a world where genetic data is being increasingly collected, shared and used by a whole host of different parties, individuals need a way to retain control of their own information.
EncrypGen, through Gene-Chain, is the first and only technology that allows them to do exactly that.
For more information, check out the company’s website.
Disclaimer: This article should not be taken as, and is not intended to provide, investment advice. Please conduct your own thorough research before investing in any cryptocurrency.
Image courtesy of Caroline Davis2010 via Flickr