If you have your DNA sequenced, someone somewhere will be making money from the data. A new start-up aims to make sure that you get your share

If you unlock the secrets of your DNA by paying a company to read your genes, behind the scenes it is probably making money by selling on your data for research. Companies like 23andMe and AncestryDNA charge consumers under £150 to learn about their health and/or origins, while others do whole genome sequencing for a little over £1,000 (although in the US it is cheaper at just under $1,000). The model works like this: send in a saliva sample, receive the results and provided you consent, which most people do because they want to help research efforts, the company retains control of the data. Pharmaceutical and biotech companies hoping to develop new drugs become their customers – off the back of your genetic information.

Nebula Genomics, a US based startup, wants to upend this exploitation. It will offer whole genome sequencing, but allow customers to keep custodianship of their data, which they can then rent to the drug companies they choose, potentially making a profit in the process.

Co-founded by Harvard DNA sequencing pioneer George Church, his graduate student Dennis Grishin and entrepreneur and former Google employee Kamal Obbad, it was launched earlier this month. The system involves using blockchain technology, which records data in an endless ledger protected by encryption, and is the technology behind the cryptocurrency bitcoin.

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“Under the current system, personal genomics companies effectively own your personal genomics data, and you don’t see any benefit at all,” says Grishin. “We want to eliminate the middleman.”

Although the aim isn’t to provide a get-rich-quick scheme, the company believes there is potential for substantial returns. Though speculative, its modelling suggests that someone in the US could earn up to 50 times the cost of sequencing their genome – about $50,000 at current rates – taking into account both what could be made from a lifetime of renting out their genetic data, and reductions in medical bills if the results throw up a potentially preventable disease.

The startup also thinks it can solve the problem of the dearth of genetic data researchers have to draw on, due to individuals – put off by cost or privacy concerns – not getting sequenced.

The real problem may be whether it is possible to keep DNA data private while still letting data buyers compute on it

Payouts when you grant access to your genome would come in the form of Nebula tokens, the company’s cryptocurrency, and companies would need to buy tokens from the startup to pay people whose data they wanted to access. Though the value of a token is yet to be set and the number of tokens defined, it might, for example, take one Nebula token to get your genome sequenced. An individual new to the system could begin to earn fractions of a token by taking part in surveys about their heath posted by prospective data buyers. When someone had earned enough, they could get sequenced and begin renting out their data and amassing tokens. Alternatively, if an individual wasn’t yet sequenced they may find data buyers willing to pay for or subsidise their genome sequencing in exchange for access to it. “Potentially you wouldn’t have to pay out of pocket for the sequencing of your genome,” says Grishin.

In all cases, stress Grishin and Obbad, the sequence would belong to the individual, so they could rent it out over and over, including to multiple companies simultaneously. And the data buyer would never take ownership or possession of it – rather, it would be stored by the individual (for example in their computer or on their Dropbox account) with Nebula then providing a secure computation platform on which the data buyer could compute on the data. “You stay in control of your data and you can share it securely with who you want to,” explains Obbad. Nebula makes money not by taking any transaction fee but by being a participant providing computing and storage services. The cryptocurrency would be able to be cashed out for real money via existing cryptocurrency exchanges.

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While Nebula is hoping to have the service up and running in the US within the next six months, it isn’t the only company thinking along these lines. Competitors also developing cryptocurrencies for the exchange of DNA data include Encrypgen and Luna DNA. But Nebula’s is the only one that offers actual genome sequencing, says Grishin. The company is partnering with Veritas Genetics, also co-founded by Church, to provide that.

The idea of trying to get individuals to monetise their own genomes using the blockchain is an interesting and new one, says Emin Gün Sirer, co-director of the Initiative for Cryptocurrencies and Smart Contracts at Cornell University.

But he says the real problem will be whether it is possible to keep the DNA data private while still allowing data buyers to compute on it. “This thing that they want to do, it is actually very difficult,” he says. Sirer predicts that the system will come under close scrutiny from researchers and maybe even hackers trying to test it for leaks. “I can imagine somebody launching a series of studies where they extract or exfiltrate some bit of information,” he says. He also predicts that people will lie on surveys to make themselves sound more interesting to data buyers so their genetic data gets rented and they can collect payouts.

“Very careful engineering” will be required in developing the secure computing platform, acknowledges Grishin, but he says that Nebula has the right partners – leaders in secure computing – that will help it accomplish this task. And, he adds, cheats won’t prosper. The company has tools to detect and block liars.