CHICAGO (GenomeWeb) – In December, LunaPBC, the public-benefit corporation that operates the LunaDNA genomic data platform, won approval from the US Securities and Exchange Commission to recognize personal health data, including genomes, as a form of currency. But instead of offering cryptocurrency, as was the original business plan, those who contribute health and DNA data for research will instead receive shares in the community-owned LunaDNA platform.
"We refer to LunaDNA as community-owned because the only way to get those shares of ownership is through data sharing. Those shares confer an ownership stake in the platform," explained LunaPBC President and Cofounder Dawn Barry.
"When value is created in the platform, that value flows through to the data sharers, also known as the holders of shares in the form of dividends," Barry added.
When it launched in late 2017, Solana Beach, California-based LunaDNA and the privately held LunaPBC were supposed to host a cryptocurrency marketplace, where pharmaceutical companies, medical device manufacturers, and other researchers would be able to purchase "Luna Coins" in order to access aggregated data from specific cohorts of patients. Individuals would then be compensated based on the value of the data they contributed to the cohort purchased.
After picking up $2 million in seed funding from individual investors in December 2017, LunaDNA raised $4 million in venture capital from investors including Illumina Ventures and Arch Venture Partners in May 2018. Barry and several other LunaPBC leaders, including CEO Bob Kain and Chief Information Officer Scott Kahn, are former Illumina executives or managers.
In the past year-plus, the field of DNA-based cryptocurrency and peer-to-peer genomic data marketplaces has grown to include the likes of Nebula Genomics, Encrypgen, Zenome, MyGenomeBank, and Genomes.io.
But the competition is not why LunaDNA decided to pivot last year. Barry said the SEC has not yet been clear on what regulations might apply and what kind of oversight and governance might be necessary for a cryptocurrency based on sensitive health data that also is protected in the US by HIPAA.
That led LunaPBC to seek and, on Dec. 1, receive an SEC qualification recognizing data as currency with which to acquire shares in the LunaDNA platform. "The only way to get those shares of ownership is through data sharing," Barry said.
She called this a "very traditional model" because value created in the platform flows through to shareholders — those who sell their data on LunaDNA. "The thing that's unique and different … is using data as currency, versus traditional dollars as currency to get those shares," Barry said.
In its petition to the SEC filed in October, LunaDNA detailed "fair market" dollar values for 25 different types of genomic, phenomic, medical device, and related data, which participants can exchange for shares. There will be up to 714.3 million shares in LunaDNA available, for a maximum aggregate value of $50 million, which works out to an average value of $.07 per share.
The new concept might still be a tough sell in some regards, as the LunaDNA platform is essentially a lockbox for data, just like so many personal health records systems that have failed over the last two decades, including the heavily hyped Google Health offering. Only those tightly tied to a health system's electronic health record have gained any traction at all, though Barry insists that LunaDNA offers more than a traditional PHR.
For one thing, contributors are given something of value, namely shares in the community-owned platform. Plus, the LunaDNA model is not only to give people a place to park their data, but also to allow researchers to shop for cohorts of patients to include in their studies.
"I do think that it's a challenging space because the problem we're here to solve is getting the right aggregation, organization, scope and scale, and structure of the data," Barry acknowledged.
"What we want to do is move up the value chain and put people first, and in doing that, create an asset that researchers can come to do research where data doesn't leave a system," Barry continued.
"People are not selling away their rights. They're sharing their data. They can control their inclusion in the system, and through offering that, offer a longitudinal engagement for research, so I think it's different than the marketplace where I'm selling individual health records."
Instead, LunaDNA hopes to "invert the research equation," according to Barry. "Institutional data sovereignty rules don't really apply when you honor the individual first," she said.
Barry noted that the transactional economy is two-sided, so there will only be researchers if there are individuals willing to share data. LunaDNA hopes to draw users in not only with the promise of shares in the platform, but with the guarantee that individuals will retain ownership of their data. The company is safeguarding privacy and security with the kind of blockchain technology that has proliferated in the cryptocurrency world.
"When you put people first, you can create a continuous, longitudinal opportunity for research," Barry said. This, she hopes, will let researchers collect not just genomics information, but "contextual data" about lifestyle, nutrition, environments, and medical records.
"It's not only the right thing to do for people, but it's also the right thing to do, I believe, for next-generation research," Barry said.
Since the SEC approval in December, LunaDNA has opened its technology platform to US residents wishing to contribute their medical and DNA data in exchange for ownership shares. Barry called it a "soft launch."
Barry did not disclose user numbers, but the parent LunaPBC in January announced plans to merge its technology with the patient engagement platform of nonprofit health advocacy organization Genetic Alliance. The two organizations will spend much of 2019 intertwining Genetic Alliance's offering, called the Platform for Engaging Everyone Responsibly, with LunaDNA in an effort to support improved health management and to provide individuals and communities with more research opportunities.
Barry said that LunaPBC and LunaDNA were attracted to the Genetic Alliance because that long-established organization also wants to "start with people" when creating research umbrellas and helping institutions recruit study subjects. "It made sense to pull our platforms together and offer those people in those [research] communities a continuum of services and platforms that start from community creation all the way through research readiness," Barry said.
LunaDNA is focused more on data aggregation, organization, and control, though it also plans on offering standardization services. What the Genetic Alliance brings is a community of 50,000 people, plus the well-established PEER system, which has attracted partners including Claritas Genomics, and a registry that is part of the Oracle Health Sciences Network.
The LunaDNA platform currently can ingest and process DNA and microarray files, and is only in the collection phase now.
By the end of 2019, Barry would like it to be capable of handling other omics data, as well as data from EHRs, wearable sensors, and fitness trackers, to give researchers a more complete picture of patients.
"Research readiness will be achieved a year from now, so [researchers will have] the ability to start discovery," Barry said. She also expects to have more partnerships to announce as 2019 unfolds.