Editor's note: This story has been updated with new information from LunaDNA.
CHICAGO (GenomeWeb) – LunaDNA, a startup genomic and medical research company, is pushing a simple concept with a bold twist: Consumers will want to share their genomic information to a community-owned database if they are financially compensated.
The difference is that San Diego-based LunaDNA isn't offering actual cash but paying in its own cryptocurrency called Luna Coins. This currency has value in that the company expects pharmaceutical companies, medical device manufacturers, and other researchers to purchase Luna Coins in order to access aggregated data from specific cohorts of patients.
"That will continue to flow through to all of the owners [of the data]," said Michael Witz, one of the four cofounders of LunaDNA.
"This challenge is a unique one in that you need very large numbers in order to drive discovery," according to Bob Kain, CEO and one of the cofounders.
"If you're talking about discovery across multiple diseases or multiple factors that impact quality of life, then you need millions of people to join, and you need them to join the same database in order to be able to drive discovery across all these individuals," Kain said. "To do that, you need to incentivize individuals to want to get in the game, and you need to provide them the right structure so that they trust the organization enough to provide high-quality and in some cases very sensitive information about themselves."
This new model came together quickly. "The idea that became Luna has only been around for three or four months," according to Kain.
Luna made its public debut within the last two weeks, announcing Dec. 18 that it had received $2 million in seed funding from a group of individual investors that includes several former Illumina executives. Ex-Illumina Chief Information Officer Scott Kahn, Illumina Cofounder David Walt, and Gavin Saitowitz, now CEO and cofounder of Prelude Capital, led the round. Luna also hired Kahn as its CIO.
Kain himself was a 15-year veteran of Illumina until he retired from his post of chief engineering officer in 2014.
Luna, which calls itself a public benefit corporation, relies on blockchain technology for security, data fluidity, and support of the cryptocurrency to reward those who contribute data to the research database. Each contributor receives a digital "wallet" with coins representing "their stake of ownership in the community," according to Kain.
The company is using Ethereum, an open-source platform for building blockchain applications and even creating new cryptocurrencies like Luna Coins, lending legitimacy to these invented currencies. Kain said that a number of online marketplaces that allow holders of Ethereum-based tokens such as Luna Coins to trade for other currencies, including similar digital currencies and even real money like US dollars.
Kain said that Luna is still working out some of the details of payment mechanisms, including how frequently contributors get paid.
He did say that the LunaDNA model would not be possible without blockchain technology. "It helps us eliminate the data silos and encourages individuals to share their genomic and personal data on a very large scale to drive discovery," Kain said.
Witz and Dan Lin — another Luna cofounder — are "serial entrepreneurs who have experience in cryptocurrency and gaming," according to Kain. They came up with the idea to apply cryptocurrency to a community-owned database of very personal information such as genome sequences, Kain said.
"At Illumina, in about 2012, I was looking for ways of accelerating discovery and started looking into federating databases and getting different people who are generating data — for instance, a genome center — to share their data with each other," Kain said. This included convincing people to give broad consent for usage of this personal information.
He said this topic came up at a 2012 meeting at Cold Spring Harbor Laboratory's Banbury Center in Lloyd Harbor, New York. "We learned a lot about the issues of trying to federate data, which means getting people to share data at the organizational level and getting individuals to share their personal data and consent," Kain said.
"Since 2012, not a lot has happened to improve that situation. Individual entities like 23andMe and some pharma companies have made inroads into generating data and getting individuals to consent to specific studies and answer some questionnaires related to those studies," Kain noted, but such data has remained locked in silos. Healthcare organizations have, of course, been wrestling with interoperability of electronic health records for far longer than that.
"I thought that the idea of using cryptocurrency to allow people to recognize ownership of a database of genomic and phenotypic information was a great step forward," Kain said. "It vastly simplifies the issues associated with ownership and it also provides people with some coin as an incentive for initially joining the database and an incentive for continuing to provide their health and medical data."
Luna sees itself as a broker of transactions between those who have data and those who need it.
"When you think about all the data that's being created right now in the world, every company is trying to be the leader and have the largest pull of data," Witz noted. "We don't think that that's a good model for all of humanity. We think everybody will be better off if there is one large, central hub of data that's not controlled by any one company, but is instead owned by the community," he said.
"What's fundamentally different [about] our model from other companies that are aggregating their own data is that, as a community-owned data company, the community is going to realize the benefits of that data," said Witz. "LunaDNA the company will just be facilitating those transactions and taking a brokerage fee, but not standing in the middle of it."
When pharma companies purchase access to data with Luna Coins, Kain said, the money will "flow back equally to the owners of the database, depending on their value contribution. It won't flow back to individuals depending on whether they were in a study or not."
The plan is to invite researchers to approach Luna with parameters for studies they may be working on, and the company will generate appropriate cohorts of patients. "Once we have a cohort, then we can look at their genomes and ask the question, 'What is similar in their genome that is dissimilar to the control group?'" said Kain.
Researchers will define the criteria, then Luna will build cohorts and conduct gene discovery activities, according to Kain. "In most cases, the people we work with aren't looking to build their own databases, and they're not looking necessarily to create their own tools to do discovery," Kain said. "What they're looking for are the gene targets. They're looking for the genes that are associated with certain diseases or impacts on your quality of life."
Luna hopes to win the trust of consumers with the community model.
"Ultimately, we think that if we do a good job of standing up this company and establishing this database in a way that truly is very mission- and purpose-focused, and if individuals truly believe that they are going to be owners of the database and the data that is generated, then that should generate trust," Kain said.
"Would you rather donate your data to an organization that is going to go off and use your data in a way that maybe you won't even be connected to and generate income on that, or would you rather join a community and, with the community, travel together on this journey of driving discovery?" he asked.