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In 2018, people he started using the blockchain to fight deepfakes, keep track of the sushi tuna from Fiji in Brooklyn and even cast a (symbolic) mark. It was just a matter of time before someone understood how to put all the 6 billion bits of your genetic code on the blockchain. Starting this week, a startup called Nebula Genomics is doing just that, offering the whole genome sequencing for free, as a way to stock for its true trick: a blockchain-based genetic market.
Of course, nothing is free free. But if you're willing to gather some health information and send your friends, you can earn special Nebula tokens that can help you pay for a lo-fi sequence, the equivalent of a first draft that someone has passed once with a secondary magic. checker. If you do not want to answer the poll questions about your donut and negroni habits or your family's history of heart disease, you can get the same quick and dirty sequence for $ 99. But if you answer the questions, and if a researcher or a 39. Pharmaceutical companies find them interesting, they could pay to upgrade you to the Cadillac of entire genomes (what is called 30x coverage, in the biz gene). In return, grant them permission to study your data.
This offer is bundled with all the promises of security, anonymity and transparency (and money!) At the heart of the immutable Blockchain's ledger. Once users have sequenced the genome, they can charge a fee, in token, to anyone who wants to access it. In the future, these tokens can be redeemed for tests and additional products that will further interpret your DNA.
Users also maintain greater control over their data than typical ones. Anyone who has gained access to an individual's identified DNA can only analyze the analysis of such data using their Nebula computers. Buyers come to see the results, never the raw data itself. The only person who can download DNA data from the platform is the person whose DNA is. The goal, says Nebula co-founder and scientific director Dennis Grishin, is to create an environment in which users can learn about their DNA and share it with scientists at the same time, while protecting themselves from potential violations of privacy.
The field of DNA testing has long been blocked by a circular problem. With whole genome sequences of about $ 1,000 each, the tests are so expensive, and the privacy concerns quite seriously, that the adoption has been slow. In addition, only about 2% of the people being sequenced will display any information that could help them deal with or avoid potential health risks. Your DNA he could say it more, if scientists had more genomes to work with. But the incentives for people are not there yet.
This entrenched chicken and egg situation is the reason why the federal government spends $ 4 billion to seize and study a million people in the United States, asking them to donate their blood and spit, and finally give them the results only for the participation price. Now Nebula is joining the trend with its freemium approach.
Founded in 2016 by George Church, one of the OGs in the field (which is the original Genomicist for you), Nebula is one of the companies trying to accelerate the arrival of personalized medicine. Its sequencing services of the entire genome will be provided mainly by the nearby Veritas, another startup founded by the Church. Together, they want to help people see the value in every part of their double helix. DNA can be a big business, as the genetic testing firm 23andMe recently clarified with its incredible $ 300 million deal. Marketplaces like Nebula will allow people to collect genomics as they work to keep control over who gets profit from their data.
Using blockchain to do it is a tempting idea, and Nebula is all but one. In the last three years, nearly 150 companies that have developed blockchain biochemical applications have raised more than $ 660 million in private and cryptocurrency markets. About a quarter of these projects aim to be decentralized clearing centers for various types of health data, according to a recent study conducted by researchers at the new center for research on the biomedical blockchain of Mount Sinai.
"What's the closest thing you can find in a direct data market?", Asks Noah Zimmerman, the director of the center. "I can not think of one, we've always asked third-party trust brokers to make these offers and the value is not for individual participants."
He compares the current system – where pharmaceutical companies pay intermediaries for unidentified health information – to university sports. In the same way that unpaid students are told to be grateful for their free education, the patients who participate (knowingly or unknowingly) are told to be happy, now there is a drug on the market that deals with their illness. "I mean, of course," says Zimmerman. "Be happy, but there is someone who makes money on the shoulders of the people on whom the product is built in. Now, there is the potential here for people who are contributing data to be rewarded in proportion to the preciousness of their data ".
For that promise to materialize, marketplaces like Nebula will have to recruit many customers. This is one of the reasons why it offers free sequencing. It's no different than when Google launched Gmail in 2004, offering ample free storage space that the search giant monetized through targeted ads – targeting that became possible only once the company raised billions of emails . Zimmerman only hopes he can do it for so long.
"My biggest concern from an entrepreneurial point of view is that these markets are valuable only when they reach a huge number," he says. "Something less than 100,000 genomes will probably not be useful to anyone." 23andMe was able to survive in some dark moments because he had deep pockets. It is not clear to what extent the investment of 4.3 seed of Nebula will bring it.
The company declined to comment on whether it would prosecute an ICO – the controversial and increasingly regulated practice between startup blockchain fund-raising through an "initial offering of coins". Like many other startups related to medical information, Nebula's blockchain is closed, with the company acting as a central authority to assign tokens and test researchers before entering them. The Church hopes to convince people that getting genome sequencing is like fastening their belts or not smoking. "Cars, cigarettes, genomes, these are all risks to public health," Church says. "They are rare, but extremely impactful if they hit you."
Nebula joins another genomic data platform called EncrypGen, which launched the first blockchain-enabled DNA marketplace on November 6th. Called Gene-Chain, it allows users to upload the type of genetic data produced by most consumer-directed companies, including 23andMe and Ancestry, and set a price for potential buyers. David Koepsell, CEO of the company, says he wants to attract 20% of 23andMe customers who have decided not to join the test company's research program. Encrypgen plans to support sequences of the entire genome by the end of the year.
It also tackles a challenging road ahead. In the last week, EncrypGen has seen a dozen transactions on its platform, according to Koepsell, and most people are pricing for a person's genotype data plus answers to health-related survey questions. less than ten dollars. Potential buyers can search for data for self-reported health conditions or for physical characteristics, such as body mass index, ethnic background or age. The DNA tokens used to purchase any data can be converted into bitcoin or ethereum on a cryptocurrency exchange.
Unlike the Nebula market, once buyers have spent their DNA token to buy genetic data, they are free to download it to their local machines. Also, unlike Nebula, anyone whose computer can do the math required can join me and add blocks. "One of the things we are trying to improve is citizens' science," says Koepsell. "There is no legal reason to prevent anyone from purchasing de-identified data and doing research with it." We wanted to democratize the process. "
Federal policies to protect human research subjects do not currently extend to de-identified genetic data. But those laws have been subject to increasing scrutiny since DNA data combined with information from other databases exposed individuals' identities. "Once you've given access to your genome data, there's no magic self-destruct button," says Zimmerman. Not even a blockchain can prevent this from happening. So you still have to be careful who you trust in your DNA.
