Is My Personal Data Worth Anything? I Turned to Blockchain to Find Out
10.01.2018

“Data is the new oil,” says just about everyone. Everyone else seems to think it’s “the new gold.” Is it, though? Unlike oil and gold, data is not a precious non-renewable resource. Wars are not fought over who controls it. Border disputes do not hinge on where it is located. The most salient difference, from my perspective, is that I have tons of personal data. I positively exude the stuff. My resting heart rate, the brand of computer I’m using to write this, the websites I visit while I’m procrastinating, the self-medicating I’ve used to help get down to business—I could go on. Surely this must be worth something to someone. Yet my economic stature is commensurate with someone who holds neither oil nor gold. So either my personal data is not like those things, or I’ve been letting this bubblin’ crude go for a steal.

I’m willing to bet the latter. Just about all of us relinquish control of our data when we “accept the terms and conditions.” It’s the price we pay for “free” internet services like email and social media. It’s not just the data—it’s our personal details. One way data definitely is like oil and gold is that it is worth much more when it is processed. Just as oil is refined and gold assayed, data must be sifted. Without knowing my age, my resting heart rate is of limited utility for a scientist working on a vascular drug. As various Facebook and Cambridge Analytica scandals demonstrate, careful sifting can literally change the course of history. As quotidian as my personal data may be, I have to assume it is at least potentially valuable.

I don’t really want to limit who sees my data. Quite the opposite, really: I wanted to see if I could actually make some scratch off it.

Over the last year or so, the idea that we are all surrendering valuable pieces of ourselves has gained traction. If I lived in the European Union, I could at least use the General Data Protection Regulation, which went into effect in May, to regain some control of my data. But I don’t—and anyway, it occurred to me that I don’t really want to limit who sees my data. Quite the opposite, really: I wanted to see if I could actually make some scratch off it. What if there were a way to present my data, including my distinguishing characteristics, to interested buyers, while retaining my privacy. This sounded like a job for blockchain technology. I figured others must have had the same idea, so I embarked on what I hoped would be a profitable journey of self-tokenization.

It wasn’t easy. A slew of blockchain startups have recently formed with the aim of offering a marketplace for people to sell their data. The general model is to connect sellers (us) with buyers, using crypto as the exchange medium. If a buyer is satisfied that the data will be useful, and both sides agree on the price, smart contracts execute the transaction. Unfortunately, none of these services appear to have come to full fruition. Fysical proposes to let people sell the location data we all leave behind like Pig-Pen’s dust. Repay.me wants consumers to use its REME-Coins to purchase goods and services; marketers will use the same currency to buy the right to study these purchases, redirecting coins back to the seller. Opiria would like to give you crypto in exchange for filling out marketing surveys—I dutifully downloaded the app, but no surveys were forthcoming.

One of the more intriguing ideas involves harnessing our personal health data. Christopher Sealey and Andrew Hoppin, co-founders of CoverUS—which earlier this year took top honors in the Consensys Blockchain for Social Impact hackathon—don’t have health industry experience. Sealey’s most recent job was at an economics think tank. Hoppin was trained as a planetary scientist. They met while both were working in New York State government. “Having worked in government, we believe government will be able to come around and solve the problem,” Sealey says. “But we also realize that the quickest way to solve it is to create an economic incentive. That’s where personal data came up. If we can get people a relatively small amount of money so they can engage in preventative care—the type we often think many people have access to but few actually do—we can help people be healthier.”

The idea behind CoverUs is to harness as much health data as possible—from self-reported data to automatically generated real-time feeds—to accomplish two major goals. It would bring together data currently owned and guarded by disparate strands of our massive healthcare infrastructure, giving individuals a more comprehensive picture of their health. And it would allow individuals to sell this data, with payments accruing to a debit card. “When someone interacts with the healthcare system, from going to the doctor to getting prescriptions filled, that data is aggregated into an anonymized user profile and sold to various buyers, from pharmaceutical companies to research hospitals,” says Sealey. “We’re not part of the value chain. That seemed antithetical to our values. What makes us think this is a real business is that if I’m getting your data from a third party, it’s a snapshot of your health at a specific moment in time, and we know how quickly people’s health data can change.”

Streamr, a company based in Helsinki, is taking a somewhat different approach. Rather than concentrate on providing potential sellers with software and apps to market their data, Streamr wants to integrate its data-gathering tool into as much hardware as possible, with an eye toward the coming age of “smart cities,” in which various data-gathering sensors will abound. “This goes to the heart of our strategy,” says Shiv Malik, a former Guardian reporter who left journalism to be Streamr’s communications director. “There are various projects out there looking to reclaim people’s data. A number of them say ‘abandon your digital habits—use our application for everything you do.’ We don’t think that’s very feasible, especially with the advent of smart cities and IOT.”

I had reached an impasse. Then it occurred to me—I don’t just have data. I am data.

Streamr is currently working with car companies to allow drivers to become data-gatherers. “Cars are amazing in that sense,” Malik says. “They can roam the environment and collect all kinds of data, but nobody bothers now. If the car manufacturer gives you the ability to sell that data, our system will allow you to do that.” Streamr is about to begin a pilot project to gather air pollution data in the East London neighborhood of Hackney. People who install the sensors on the roof of their homes can benefit if that data is purchased by, say, research institutions or even the road department, who could use real-time pollution data to reroute traffic. The money probably won’t add up to much, but Malik sees projects like this as an important step forward. “Companies use us as data slaves,” he says.” We all know that. And we’re all a bit pissed off about it.”

I know I am. But Streamr, which really isn’t optimized for individuals, wasn’t the answer to my immediate goal of bringing my data to market. “It’s possible to sell your data with Streamr by integrating some kind of IOT thing, but it’s difficult. This really isn’t for individuals.”

I had reached an impasse. Then it occurred to me—I don’t just have data. I am data.

Personal genomics companies offer DNA analysis to individuals who send in a sample (usually saliva in a test tube). The service usually costs between $100 and $200. The collective worth of this data was underscored in July when 23andMe, one of the leading companies, opened up its customer’s data to pharmaceutical giant GlaxoSmithKline for a reported $300 million. David Koepsell, cofounder of Encrypgen, points out that 23andMe’s customers were allowed to opt out of the questionnaire that makes their data valuable, but few bother to read the fine print. Analyzing the transaction, Koepsell estimates that if 23andMe’s customers were paid directly for the data sold to GSK, each would net about $130.

Encrypgen— helmed by Koepsell, a former lawyer and philosophy professor and his wife, Vanessa Gonzales, a genomic scientist— is one of handful of companies that have formed to give people a blockchain-based platform to sell their DNA data. This cottage industry may well be the first to capitalize fully on personal-data-reclamation, for the simple reason that the data is so valuable. “Virtually all genomics companies monetize the genetic data of their customers in some way by making it accessible to to pharma and biotech companies,” Koepsell says. “We want to enable actual individuals to retain ownership and control of the data and to essentially have full control of who accesses it and for what purposes the data can be used. And to be very transparent by using blockchain as a public ledger to document and track these permissions.”

Another advantage of using the blockchain is that the data can’t be resold on a secondary market. “Essentially, the way it will work is is our blockchain will have validator nodes that will hold the keys to decrypt the data and make it available,” says Dennis Grishin, who took a break working on his doctorate in genomics and genetics at Harvard to become chief scientific officer at Nebula. “Users will requests from researchers—‘I’m John Smith and I work in oncology and I’ll pay this much’—and the individual can say yes or no. If the answer is yes, tokens in the smart contract are transferred to the individual. It’s not a data-sharing platform per se, because the data stays where it is. Researchers are able to compute the data without downloading it. That’s an important aspect in regard to privacy.”

Like the founders of CoverUS, Grishin imagines that if this market develops, both sides will benefit. More people will decide to sell their DNA, enlarging the pool of data available for study. “In general, human genetics is still very poorly understood,” he says. “The core reason why we have to generate core genomic data is that we need very large data sets to understand how medical conditions are influenced by genetics. I think it can lead to fantastic advances that are hard to imagine today.”

As with any new market, it’s still not clear what value personal DNA will accrue. Grishin imagines that someone with a rare genetic condition could conceivably command thousands of dollars, though he stresses that the process of establishing prices will require “tweaking and empirical studies.” There is also the problem of working with genetic material already held by the personal genomic companies. Last summer, TimiHealth criticized 23andMe for resisting efforts by their customers to import their data into the blockchain-based TimiDNA platform.

All blockchain-based data reclamation companies will face similar hurdles as they develop nascent markets. “Most people are aware that someone is making money off them—they’re just flummoxed about how to change that,” Streamr’s Malik says. “That’s why we’re doing what we’re doing. We’re not there yet—no one is. But we’re on our way.”

“We want to give you control so you can sell data on your terms to who you want,” he adds. “Think of that shifting to any connected device. I want that. Don’t you?”

I certainly do. But like Malik says, we’re all on the cusp, so even my attempt to sell my DNA would have to wait—Encrypgen and Nebula will both ramp up sometime in the near future. I really wanted to cash in now—which is why I found myself, on a recent late night, reciting into my computer’s microphone non sequiturs as they appeared in a Telegram window.“Play my ‘Black Sabbath: the Dio Years’ playlist.”

“How long do I have to mix the egg whites to make a meringue?”

“My name is Max. My world is fire and blood.”

“No! That’s not for you.”

And so on. I was participating in the Language Network’s efforts to use blockchain to “map the human language protocol.” Their goal “is to create an open infrastructure that accelerates language AI innovation and shares value equitably across the ecosystem’s contributors.” In exchange for LANG tokens, I was selling my voice data—timbre, pronunciation, rhythm—to help people who work with artificial intelligence improve voice-recognition and voice-activation products. AI will likely be a prime source for buyers interested in purchasing our data. If you want to mimic human behavior, you best accumulate as much data as you can that describes it.

“Trying to be happy by accumulating possessions is like trying to satisfy hunger by taping sandwiches all over your body.”

“Alcohol is like Photoshop for the brain.”

On and on, the program gives me sentences, which I dutifully read, and the tokens flow in. Finally, I’ve found a market for myself. So far, I am worth 164.18 LANG.