If you’re broke with bodily fluids to spare, you can sell your blood plasma. You can pawn off your sex cells.
Or, if a new startup is successful, you will soon be able to spit in a cup, upload your genetic code to the blockchain, and sell it for cryptocurrency.
EncrypGen says it wants to build the Amazon of genetic material. The startup will let users put their DNA online, sell it to researchers or companies, and be paid in EncrypGen’s own cryptocurrency. It sounds like the premise of a sci-fi paperback. It’s also made EncrypGen millions in bitcoin, before the company has even launched its gene-selling product.
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In 2009, Dr. David Koepsell authored a book on the troubling trend of private companies patenting parts of the human genome. Who Owns You? The Corporate Gold Rush to Patent Your Genes warned of a future in which companies held property rights over significant portions of the human genome, blocking medical advancements and personal freedoms.
Eight years later, he says he’s fighting back against that future with his company EncrypGen, which wants to “empower you to control who and what gets access to your data” by helping you sell that genetic data to researchers. The platform, slated to launch next week, is at the front of a pack of companies hoping to sell genetic information on the blockchain, science publication The Conversation previously reported.
EncrypGen users will be able to upload their genetic profile (which they can obtain through increasingly popular DNA-testing software like 23andMe) to the platform, and share a login key with their doctors. Or they can sell their genetic profile to their choice of researchers, pharmaceutical companies, or anyone who asks.
“If you choose, and you don’t have to, you can also make it available for searching by scientists,” Koepsell told The Daily Beast. People who opt into the search platform will answer questions about their background and health. Buyers will be able to purchase the data that shows up in the search “but it’s also decoupled from your individual data, so that even we don’t know who the individual is,” Koepsell said.
He’s not sure how much money a person’s genetic profile will fetch on the open market. 23andMe, he claimed, sells user data and “some of our research has shown that some of those datasets sell for up to $3,000 per individual.”
23andMe pushed back on the claim, saying it does not conduct research on an individual level, and that it has never conducted any studies where it netted $3,000 per individual donor.
“We do not sell individual level information, or sets of individual level information. Customers have the option to participate in 23andMe Research, which is entirely voluntary and requires a separate, explicit consent beyond our Terms of Service,” the company told The Daily Beast. “23andMe Research is overseen by an external, independent ethics review board and includes research sponsored by, or on behalf of non-profit foundations, commercial companies, and academic institutions as part of research collaborations. Some of these collaborations include remuneration, though many are uncompensated.”
23andMe has, however, sold aggregated data to drug companies. The company Genetech paid 23andMe $10 million for data to be used in a Parkinson’s disease study.
But when researchers buy EncrypGen customers’ data, it won’t be in U.S. dollars. Instead, the payout will come in $DNA tokens, the company’s proprietary cryptocurrency. As of Wednesday, the digital currency was worth $0.70 per coin, according to cryptocurrency trading sites.
Koepsell said the all-cryptocurrency business model was necessary for EncrypGen’s vision of an international DNA marketplace.
“One of the challenges to having what we think is an international internet of genomics is establishing an easy mechanism for not only privately and safely exchanging the data, but paying for it without having to worry about fluctuating costs of local fiat currencies,” he said.
But cryptocurrencies, particularly boutique coins like $DNA tokens, are notorious for their fluctuating prices. Two weeks ago, $DNA was worth $1.88 per token, more than double its current value.
Some of that price whiplash comes from online speculation from people who have no plans to ever use the EncrypGen service. Like a growing number of companies, EncrypGen used cryptocurrency to fund its launch, through a move called an Initial Coin Offering or ICO. During an ICO, a company sells a cryptocurrency that can be used to purchase a soon-to-launch service. Buyers snap up those cryptocurrencies in the hopes that the company will be successful, and that demand for the cryptocurrency will rise, driving the price up. Crypto enthusiasts sometimes try to manipulate the prices by doing free promotion for their favorite coins, or engaging in “pump and dump” schemes where a group of people buy into a coin at the same time, artificially inflating the price before selling the coins at their peak value.
So far, ICOs’ clearest winners are the companies that launch them. EncrypGen’s ICO this summer “raised about 300 Bitcoin, which at the time was under $1,000,000,” Koepsell said, “but obviously the price of Bitcoin has gone up.”
As of Wednesday, 300 bitcoin is worth more than $3,000,000. At bitcoin’s peak last month, 300 bitcoin was worth nearly $6,000,000. Koepsell said venture capital investors were also expressing interest in the company.
But some experts are less than sold on EncrypGen’s premise. Sandra Park, a senior attorney with the American Civil Liberties Union who worked on the organization’s successful Supreme Court bid against gene patenting, said the company should work with patient advocates to make sure donors know exactly how their genetic data is being used.
“I think there are a lot of privacy concerns that come up for patients when they contribute their data. The context people are most familiar with are contributions to research studies,” Park told The Daily Beast. But commercial sale of the data is more “uncharted waters, in terms of how patients navigate that.”
De-identifying medical data, which EncrypGen promises to do, is not always as effective as donors think, Park cautioned.
“There have been studies that have shown the de-identification process tends to make people think they’re de-identified when they’re not,” she said, “or you can easily be re-identified using publicly available information.”
EncrypGen acknowledges the ease with which apparently anonymous genetic information can be traced back to its donor.
“Even de-identified public data is risky for the donors, as recently revealed by studies using data from the Personal Genome Project, in which 40% of the data was re-identified,” the company wrote in a promotional slideshow (PDF), warning that companies using less-secure storage systems than EncrypGen could be hacked, and their clients re-identified.
EncrypGen’s solution, it said, was using a system that could not be hacked. When a Redditor claiming to have “a graduate degree in bioinformatics and don’t believe in this project” asked what would stop researchers from distributing the genetic information or saving it to easily hackable computers after purchase, Koepsell conceded that “we cannot ensure they aren’t saved. We can only watermark them so we can later track their provenance.”
The Redditor also asked what would stop a person from falsely reporting that they had a rare cancer in order to sell the information to more buyers. Koepsell said EncrypGen donations would run on the honor system.
Despite the doubts, Koepsell said he’s seen significant interest in the project, which he describes as a solution to the problems laid out in Who Owns You.
“Most people are increasingly aware that the data they’re given from consumer genetic testing services is not under their control anymore,” he said. “It’s been used and sold, and money’s been made off it that they don’t have any access to.”
