These Companies Want to Secure Genetic Data on the Blockchain

The much-hyped technology behind bitcoin could play a key role in finally making precision medicine a reality.

Ulrich Baumgarten via Getty Images
Ulrich Baumgarten via Getty Images

We are poised on the edge of the age of genomics. It won’t be long, we’re promised, before medical treatments will be tailored to our unique genetic makeup, thanks to researchers and physicians analyzing massive pools of human genomic data.

Yet even as the price of genome sequencing edges closer to $100, we don’t seem any closer to this golden age of precision medicine. The problem is that the bulk of genetic data essential to discovering new drugs and therapies is currently held by a handful of private genetic testing services, pharmaceutical companies, and their handpicked research partners.

Critics of this centralized and privatized system say that it’s vulnerable to hackers, inefficient for researchers, and gives individuals little control over how their data is shared. The recent news that police investigators accessed publicly available genomic data to capture the Golden Gate Killer underscores the fear that people don’t really know how their data is being used.

Now a small group of startups believe they’ve found the key to securing private genomic data while simultaneously making it available to more researchers. And the key, they say, is none other than the blockchain, the much-hyped technology behind cryptocurrencies like bitcoin. The idea is that the blockchain, with its built-in security and programmable smart contracts, will provide the backbone for a global genomics marketplace.

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Axel Schumacher is the co-founder and CEO of Shivom, a startup that aims to build not only the world’s largest genomic data hub, but a broader “precision medicine ecosystem” that lives on the blockchain and is powered by its own cryptocoin.

“Your genomic data is the most valuable thing you own,” Schumacher told Seeker. “With current collection and storage methods, it’s not guaranteed that it stays private.”

A security breach at a private genetic testing company could expose highly sensitive and personalized data to hackers. But since the blockchain is a distributed ledger — where encrypted data is verified by millions of computers worldwide — it would be nearly impossible for a malicious entity to steal or alter blockchain-hosted data.

Then there’s the issue of private companies sharing their users’ genetic data with third parties. Under the current system, genetic testing customers have to actively opt out of data-sharing arrangements with private research firms and pharmaceutical companies. And it requires a relatively high degree of technical savvy to download and share your own genetic code with someone like your physician.

That’s where smart contracts come in. Instead of handing your genetic data over to a middleman or broker — where you cede a large measure of control and ownership — you can program the blockchain to only share your data with certain parties.

“I can write into a smart contract that I want to share my data with family members or with my physicians to tailor specific therapies based on my genome,” said Schumacher. “I also want to share this with a clinic in case I’m hospitalized, but I don’t want to share it with my health insurance.”

You can also put a price on your genome. There’s a reason why pharmaceutical companies and research firms have spent hundreds of millions of dollars acquiring genomic databases. They need to crunch lots of genetic data to find the unique variants that predict or resist certain diseases. Blockchain-based databases like Shivom would create an open marketplace where researchers could buy access to genetic data directly from individuals who give their consent.

“A lot of people want to support medical research, but don’t want to give broad consent for everyone to access their data. But let’s say in my family there’s a history of diabetes, so I might want to support diabetes research. You can put all this into a smart contract,” said Schumacher.

Shivom is launching its own cryptocurrency called OmiX that will enable the buying and selling of genomic data on its blockchain platform. Individuals who earn OmiX tokens can then use them to pay for other precision healthcare services offered in the Shivom ecosystem. Schumacher envisions third-party smartphone apps that use your genetic data to warn about drug interactions or offer lifestyle advice to reduce risk factors.

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Shivom is not the only player in the blockchain genomics space. Nebula Genomics, co-founded by DNA sequencing pioneer George Church and backed by biotech firm Veritas, is probably the biggest name, and competing startups include Zenome and EncrypGen.

None of these services has launched yet, and Shivom is still in the fundraising stage, recently announcing $32 million in first-round investments. All of these blockchain-based platforms will offer genome sequencing services in addition to secure storage and control over your genetic assets.

If genomic data-sharing on the blockchain takes off, there’s hope that all electronic healthcare records would someday be migrated to a globally distributed platform. Under such a system, individuals would have secure access to their complete healthcare record and could easily share it with the providers of their choice. The golden age of healthcare indeed.