Imagine a world where people earn income by taking weekly blood tests and send daily selfies to a database. The government, as well as private software companies, pharmaceutical companies, and research universities, buy this data to develop drugs and anti-aging products. The more valuable this data is to these companies—like pictures of the skin, face, or "hidden areas" of the body—the more income a user earns.
This is the future being pitched by pharmaceutical company Insilico Medicine, Inc. and blockchain mining and management company The Bitfury Group, who want to pay people in a cryptocurrency called "LifePound" in exchange for voluntarily turning over medical data. The data will live on a blockchain, a digital log that uses every computer running the software to store unaltered information, theoretically forever.
“Right now it’s difficult to predict, but I think that if [users] submit blood tests, pictures, transcriptomes let’s say on a weekly basis, you probably will be able to earn a good universal basic income,” Alex Zhavoronkov, the founder and CEO of Insilico, told me on the phone.
The idea was presented at blockchain business conference called TaiwanChain, organized by Taiwan’s Taipei Computer Association, and in a business proposal published in the journal Oncotarget last month. It’s worth noting that Oncotarget has been accused of being a predatory publisher on multiple occasions.
Insilico and Bitfury claim to have already created a pilot program called Longenesis. Zhavoronkov said it is being tested by Insilico and Bitfury employees, who upload their weekly or biweekly blood tests to a blockchain software called Exonum but do not receive cryptocurrency for these contributions.
Zhavoronkov wants Longenesis to be available to the public two years from now. According to the Oncotarget paper, the program will “allow patients to benefit from their data receiving crypto tokens as a reward for their data or for healthy behavior.” Zhavoronkov explained that Longenesis could function as an inclusive health care system where governments encourage participation, consistent users earn a living wage, and health care providers accept tokens from the Exonum blockchain in exchange for services and preventative care.
"I know that other people might not like the idea of being healthy all the time"
The plan is for the blockchain product to ingest any type of medical data, including genetic tests, blood and urine tests, radiology images (from MRIs and X-rays), social media feeds, and pictures of hair, skin, face, and the body. Users can choose to anchor, or back up, their submissions to Bitcoin’s blockchain structure, which is like betting on the security of Bitcoin (not the price of it) to protect their data. Notably, once data is on a blockchain it can not be altered or removed, so there’s no room for regret.
“I would love to live in a world where I’m motivated to regularly take all kinds of medical tests for free, I get the data back, and I will be able to sell this data to the marketplace, and I earn all kinds of goods and services—primarily health related,” Zhavoronkov said. “I know that other people might not like the idea of being healthy all the time, even though [that] would be a very strange thing to choose. But they can choose this lifestyle as well.”
A diagram in the paper notes that "high resolution pictures" of "hidden body parts" would be types of "rare data" that would be useful to have. I asked Zhavoronkov if this meant the company would be soliciting nudes or genitals (especially because the photo is a picture of boxer shorts), but he said in an email that it would not.
"The designer used an element of clothing to show that there are hidden body parts covered by clothing. It does not imply genitals," Zhavoronkov wrote. "On a side note, there is no lack of genitals in the public domain. I think it is the most abundant data type, so we did not even consider it before you made me think about it."
With Bitcoin and Ethereum prices reaching new highs seemingly every day, it’s no surprise that people are trying to combine blockchain tech and medical data. We’ve seen dozens of blockchain startups raise tons of money using Ethereum’s blockchain to develop services, but with barely anything to actually show.
It’s unclear which of these startups—if any—of these startups will actually take off, much less become an important part of our everyday lives. The same is true for Insilico and Bitfury’s venture.
Insilico and Bitfury’s plan is notable, though, because both of them are well-established in their fields: Insilico creates software using AI for pharmaceutical companies like Johnson & Johnson, cosmetic companies like L'Oreal, and partners with Johns Hopkins University’s Emerging Technologies Center to predict disease and design drugs. It recently announced a partnership with GlaxoSmithKline—one of the largest pharmaceutical companies in the world—to use AI to develop new drugs. Bitfury, meanwhile, started as a Bitcoin mining firm but has expanded out to software services (Exonum is its main play in this area). The company says it’s already raking in roughly $100 million in annual revenue.
These aren’t just random companies with a wacky idea, but ones with serious connections and legitimate deals with prominent organizations.
It’s noteworthy that companies already collect private medical data without patient compensation or consent. For instance, bioinformatic companies like IMS Health, who have data-sharing contracts with retail pharmacies, insurers, and government health agencies. One could argue that the inclusion of compensation and consent in software like Longenesis is an improvement, but Longenesis raises entirely new ethical problems.
After all, Longenesis is designed to host and sell intimate medical photographs, which many people will consider to be sensitive. And the people most likely to use Longenesis are probably the financially vulnerable—many people currently participate in paid medical experiments, and those people rarely do so because it’s particularly fun. Sometimes, it’s to pay rent. Clinical trials pay participants more when they take more medical risks.
Zhavoronkov acknowledged the ethical concerns raised by Longenesis and platforms like it, but he believes that by introducing it slowly—through a pilot, published paper, clinical trial, and then public release—that Insilico and Bitfury can establish responsible moral standards.
“[If] we build expertise in this area and publish more research papers, we are likely to set the standards to avoid dangers in AI and blockchain and health care,” he said. “There are huge numbers of ethical issues [with blockchain and health care]. There’s ethical issues upon ethical issue. But we decided not to deal with it ourselves, but to actually open it up for a debate and solve those ethical issues before we or anyone else launches this whole thing.”
But if Insilico and Bitfury want to establish these moral standards, it’s important to consider their political ethos. The authors of the paper explicitly express frustration about how the Health Insurance Portability and Accountability Act (HIPAA) of 1996 regulates the use of medical data, and they believe that patients personally submitting their own data could help them evade regulation.
“The regulators often set up the barriers for the consumer data collection and storage, substantially inhibiting the propagation of the recent advances in AI into the clinical practice,” the paper reads. “The introduction of the blockchain-based data ecosystem may help ensure that the individuals take control over their data, and companies and research institutions may acquire data more freely—reducing the need for the regulators to interfere.”
But building a network upon an anti-regulation ethos can result in a system that isn’t in the interest of users. For Uber, that attitude bore an actively concealed ecosystem where surge pricing is inconsistent, information is kept from drivers, trade secrets inform company decisions, sex discrimination is rampant, and sensitive user data is hacked and news of this hack is covered up. Uber may be facing a lawsuit for its use of trade secrets and sex discrimination, but only after growing to 40 million monthly rides.
Quite simply, it’s not safe to assume that companies will prioritize the interests and safety of their users. However, Zhavoronkov insists that Insilico and Bitfury are worthy of trust in a data-driven economy.
“We are showing that data is now the new kind of oil, the new universal currency,” he said. “We have moved from neoclassical economics where labor is the core driver of the economy, to this place where the economy is driven by this data, by health care, and by health.”
If data truly parallels oil, as Zhavoronkov suggests—a commodity that has driven war, social crisis, and environmental disaster—it’s worth being wary of the companies that control data, and the futures that these companies want to create from it.