The Coming Revolution in Genetic Research–Identifying Current Hurdles
The modern era of genetic research began in 1990 when the Human Genome Project began the monumental task of decoding the blueprint of our DNA.
The project, which was coordinated by the United States government with significant assistance from universities and international partners, finished two years ahead of schedule and revolutionized the fields of medicine, biotechnology, and the life sciences.
Since then direct-to-consumer companies like 23andMe and Ancestry.com have created a marketplace for personalized genetic reports. Though these companies have been successful in many regards, significant hurdles still remain in advancing genetic research to the point where scientists are able to cure and prevent severe diseases.
According to the Centers for Disease Control and Prevention (CDC), the vast majority of America’s leading causes of death stem from genetic factors.
One of the biggest hurdles in advancing genetic research is the need for larger data sets. In other words, scientists need more individual genomic profiles in order to test new medicines and reduce the rate of failure of Phase III clinical trials, which have a 40% failure rate.
But citizens are increasingly reluctant to entrust researchers and biotech companies with their genetic data.
Another problem, says LunaDNA founding partner Nick Naclerio, is that even when genetic research is available, there are limits on what can be done with it. “There has been an explosion in the amount of human genome sequencing, yet much of the data remains locked in proprietary corporate databases and segregated from other types of health records, limiting its utility in medical research,” said Naclerio.
“Luna DNA will accelerate important medical discoveries by putting individuals at the center of a cooperative effort to aggregate and organize a community-owned repository of longitudinal health data.”
To combat these problems, new biotech startups are attempting to remove barriers of access and privacy concerns with innovative business models. LunaDNA is one such company.
Its founders believe that a “community-owned platform” powered by blockchain technology can solve numerous problems at once by encrypting consumer information and then, by compensating customers for their genetic data, incentivizing them to help researchers build a stronger library of genomic data.
Who is Luna DNA?
Helmed by the former executives of the $40B genetic sequencing innovator Illumina and based in San Diego, LunaDNA was founded by Dawn Barry (president) and Bob Cain (CEO).
Illumina invested early in the endeavor, as well as Arch Venture Partners, UK-based Bridgelink Capital, Seattle-based Hemisphere Ventures and advisor Dr. Aristides Patrinos, who was a central figure in the original Human Genome Project. Luna has also partnered with a variety of leading disease foundations, academic institutions, and drug development companies.
While LunaDNA is for-profit and has shareholders, its founders engineered the company as a “public benefit corporation,” a designation recognized by only 33 states which essentially means a for-profit company will prioritize social and environmental factors just as readily as shareholder concerns. It means the effect the company’s revenue-generation has on its surrounding ecosystem and the people who inhabit it is just as important as profit.
On its website, LunaPBC (which manages the LunaDNA platform) states that its values are “purpose driven…people-centered…inclusive innovation…authenticity, honesty, and transparency.”
Other public benefit companies (PBCs) include environmental activist and fair-trade businesses, so the integration of this ideology in a genetic research endeavor is notable. PBCs, often confused as non-profits or B-corporations (though they can be all three) are increasingly catching the eye of venture capital investors as high-value startups.
Luna is the only PBC in the field of blockchain-based genomic companies, just as it is the only community-based one.
The idea behind this community is to create the largest private genetic database, which combines medical data from both clinics and wearable devices. The larger the database, the more likely researchers can develop new drugs that will make it to market.
LunaDNA founders envision the company as a kind of high-tech, non-hierarchal co-op that can help usher in a new wave of medical research and pharmaceutical innovation.
With its strong ownership pedigree and ethical ideology, LunaDNA definitely enters the field as a force for change. But how exactly does the company expect to wed technological innovation, philanthropy, and genomic research into one platform?
What does LunaDNA do?
The purpose of Luna’s “community-owned platform” is establishing three critical incentives to consumer participation in genetic research: privacy, security, and financial incentive.
Of the 20 million consumers who have used services offered by the popular direct-to-consumer genetic sequencing services, very few access that information on a regular basis for the purpose of improving their health and virtually none leverage it for financial gain. Luna wants to change that and they have a strategy for doing so.
In defining Luna’s business model, it is important to clarify that it does not offer its own genomic sequencing service. Such information is aggregated from other providers and then integrated into a blockchain system that allows consumers to monetize their data.
The revenue is generated by pharmaceutical companies and researchers seeking those specific data sets within a larger library of genomic material.
So, instead of being charged–as you would by 23andMe and Ancestry.com–you actually earn money. This is what Luna CEO Bob Kain means when he refers to one’s personal genomic profile as a “digital asset.”
Co-founder Barry describes Luna’s purpose as “breaking down these silos of data and centralization that have prohibited meaningful research, demonstrating transparency with people in data usage, and making sure that we’re engaging people responsibly as partners in medical research.”
The way Luna intends to break the centralization model of corporate data and offer consumers both transparency and privacy is through blockchain technology. Blockchain creates an immutable ledger of transactions that is encrypted and is thus safe from fraud or manipulation.
The blockchain system ensures that LunaDNA users will be in total control of their genetic information, as their data cannot be accessed without customer consent. It creates an environment of both individual privacy and system transparency.
Because of its encrypted nature, blockchain is the basis for most cryptocurrencies. Luna’s community-owned platform involves a kind of cryptocurrency too, Luna Coin, which the company refers to as a “utility coin.” Customers store Luna Coin in a “digital wallet” and can exchange it for fiat currency or use to purchase other LunaDNA items or services.
“Customers interested in conducting research in the Luna database,” co-founder Barry explains, “will purchase Luna Coin through a public exchange to pay for the service, thereby creating an economy between data contributors and purchasers.”
Customers also receive Luna Coin payments if a researcher or biotech company purchases their data through the platform. This innovative DNA platform solves many of the existing problems in the commercial genetic sequencing industry and has the potential to revolutionize drug and medicine development.
How do customers share data on the LunaDNA platform?
Once a customer is signed up on the LunaDNA platform, sharing data requires the simple uploading of a DNA file.
You can also choose to take a health survey. Acceptable data types include files from 23andMe, AncestryDNA, MyHeritage and Family Tree. You can also submit genotyping data; the company is working to integrate additional data types so that customers can upload information from whole genome and exome DNA files, RNA, microbiome, electronic health records (EHRs) from your doctor or healthcare provider, and wearables (like fitness/activity trackers, smart devices and medical devices).
Once your data is uploaded, identifying details are eliminated so that you are essentially anonymous, and it is stored securely in the platform library. No outside party can access your data. They must essentially get your permission and pay you for using your data.
Luna’s founders hope that this will mark a new phase of transparency in the commercial genetic research industry–a phase in which consumers aren’t reluctant to share their data out of fear of privacy violations. If DNA and genetic databases can grow to contain millions of entries, there’s great hope that thousands of diseases can be treated or cured.
How is customer data stored securely?
Anxiety over privacy concerns is one of the biggest impediments to genetic research.
In a 2017 study of 13,000 people, over half of the respondents worried about privacy and 86 percent expressed mistrust of researchers having access to their genetic profile.
Integrating an encrypted blockchain system into the LunaDNA platform was an important step towards security and privacy but the company has taken other measures to ensure that customer data is safeguarded. For one, the customer is always in control of the data and can completely delete it from the system at any time.
No third parties are given access to the data at any time. In an age when social networks have been known to sell user information to advertisers, this element is key.
Two, community members’ data is handled with HIPAA and GDPR compliant security protocols. And since data is not shared outside the platform, if you choose to delete information it really is completely gone. It is not copied over to any database.
Even if you have already shared your data, you can retroactively revoke your consent in the settings.
How do LunaDNA shares work?
Because the community is so important to the company’s work, LunaDNA wants customers to actually own shares of the business.
Anyone who uploads data to the platform earns shares just as if they owned public stocks or securities.
As an extra incentive, when the company’s research produces revenue, shareholders will receive additional dividends based on how many shares they have. This means that if you participate early in the company’s research and its value really takes off in the near-term future, you could earn a considerable profit.
Conclusion – genetics research as a community project
We’ve entered a new age of genetic research and the scientific and medical community needs participation in order to build up a repository of genomic data.
LunaDNA, by far the most community-minded genetics startup to date, uses an innovative, “disruptive” business model to incentivize customers and make it financially lucrative to share their data.
But in order to “liberate data streams” and solve the “interoperability and standardization” problem described by Dawn Barry, both Luna and researchers in the field need participation.
“Discovery [in genomics] cannot happen at the individual level,” co-founder Kain said, who explained that truly groundbreaking genetic research requires hundreds of thousands or millions of individual data sets. “We cannot solve these problems in genomics and health unless we come together as a community.”
Allowing customers to join a community-driven organization and monetize their data while keeping it secure seems like the best route towards increased participation. If blockchain really is the technology of the future, as many advocates proclaim, and cryptocurrency keeps catching on, the idea of earning Luna Coin while learning crucial information about one’s disease potential could be a winning combo.
Most people would not balk at the opportunity to learn about genetic risk factors they have, especially if that data will contribute to curing genetic diseases.