Scientists lust after genomes like the wolf from a Tex Avery cartoon, heart pounding in throat, tongue lolling, fist pounding on the table, submarine-dive-ahOOOgah!-alarm sounding—all out of desire for the hot, hot data curled coaxingly inside every one of your cells.
Think of all the information tucked into those sinuous DNA spirals—and the life-saving discoveries that some smart machine learning could pull out if it had lots and lots and lots of it to learn from. But first, researchers need a lot of genomes. The bigger the database, the better—only about a million people have taken it all off, as it were, and gotten their whole genomes sequenced. Even though about 12 million people have gotten at least some of their genes unravelled—mostly by companies like 23andme or Ancestry—that level of detail isn’t enough for a precision-medicine future. But it’s getting easier: Ten years ago a whole genome cost $10 million a pop; today it’s more like $1,000.
So far, getting your whole genome sequenced won’t tell you as much as you might hope about your health. It can’t—not until the genome jockeys have had their way with a much bigger database. Chicken, egg, etc. And there’s an obstacle. In a study of 13,000 people, 86 percent worried about what would happen if a researcher misused their genetic data. Slightly more than half had concerns about their privacy.
Obviously there can be only one solution: the blockchain.
Did you just hear a record-scratch? Did the picture just freeze-frame? Yeah. That’s me. You’re probably wondering how I got to talking about blockchains.
Well, it all started when people interested in cryptocurrencies like bitcoin and ethereum realized that their most interesting aspect was not the preposterous valuation or the planet-jeopardizing energy vampirism, but the secure, unhackable ledger that keeps track of transactions. Perhaps that might be useful in, for example, health care, where nobody really knows how to move around electronic medical records securely. An IBM survey of 200 healthcare execs found that 16 of them planned to have a commercial blockchain something-or-other this year. A study from Deloitte promised that the blockchain’s ability to create nationwide health information interoperability could have transformative potential. Transformative information interoperability, y’all! I mean, come on!
Which brings us to now: The 2018 version of “Like Uber, but for X” is “Y, but on the blockchain.” (Y=genomics.)
Early February brought the announcement of Nebula, a company co-founded by the imperial macher of genomics, George Church. His expertise is collecting and understanding genomes; the blockchain stuff, as he hilariously acknowledged in a Q&A with the journal Science, is somebody else’s problem. “When you have the blockchain you have a trustless mechanism in place, where people know they can verify who’s accessing their data,” says Dennis Grishin, another Nebula co-founder. In other words, a blockchain brings security and trust without centralization. “You don’t need to trust or verify a third-party central authority to take a cut.”
The Nebula team expects that people will get their whole genomes sequenced—by Nebula’s machines or others. Research groups that might want to use any individual’s data can pay those individuals to access it with Nebula tokens purchased from the company. (And people can buy their own sequencing from Nebula with those tokens, too.) Research on the DNA, says Grishin, happens on securely partitioned computers, and the buyers of the data get access to the results.
That sounds, maybe, complicated? “The first group of people we’re reaching out to is the cryptocurrency community,” says co-founder Kamal Obbad, “which is on average better educated about data privacy.”
Nebula has competition. LunaDNA will let you upload your genetic information and receive “LunaCoins” when you let researchers have access. EncrypGen does something similar, but with metadata about the actual genome. The AI health care company Insilico is building a system called Longenesis that will let people upload and trade all kinds of health and medical data, not just genomes. And it’s working with BitFury, a major miner (heh) of bitcoin. Zenome lets you upload a text file of your genome, and pays in ZNA Tokens.
If you believe that these synthetic marketplaces have real value, then blockchains are good, and it makes sense that cryptocurrencies could power and incentivize transactions. Actually, I guess all markets are synthetic, but still. It’s a promising idea. “My wife is a genomic scientist and I’m an ethicist and a lawyer,” says David Koepsell, the CEO and founder of EncrypGen. “We were interested in keeping privacy and encouraging data use in genomic science.”
The strongest parts of the internet are decentralized and peer-to-peer. Leveraging those characteristics does seem like great news for genomics and medical records in general. Linking all those As, Ts, Gs, and Cs to specific diseases, susceptibilities, and health outcomes could genuinely change medicine. Drugmakers could tailor therapies to specific people; diseases of old age could get corrected before they ever manifest themselves.
So maybe the people who actually provide the data that’ll enable it should get a little something for their trouble, huh? “If these sequencing companies truly promote ownership by the individual of their genome, that’s a great segue to owning all your medical data—your genome, the data you generate from sensors, your scans,” says Eric Topol, a genomics researcher at the Scripps Research Institute.
But blockchains may not be the perfect solution. For one thing, most of the new genomic blockchain companies aren’t on the same kind of network as bitcoin. That cryptocurrency is “trustless” because no central authority validates the transactions in the ledger, and anyone whose computers can do the required math can join to mine and add blocks. Medical information-related start-ups tend to be closed blockchains where a central authority—the company, usually—awards the tokens and decides who’s in.
Source: https://www.wired.com/story/solve-genomics-with-blockchain/
