Key Takeaway: With concerns about the privacy of genetic data rising, Nebula Genomics has developed a Blockchain-based genomic marketplace, where users decide who gets access to their data and potentially receive compensation for sharing it. Founded by genomics pioneer and Harvard professor George Church, Nebula hopes to help accelerate genomic research and precision medicine discoveries.
Genome sequencing today is like the internet back in the late 1980s. It is just waiting for the right tipping point.
That’s according to genomics pioneer and Harvard professor George Church, who’s dedicated his career to finding the right catalyst to take personal genome sequencing mainstream, testing ideas ranging from genetic matchmaking to anti-age gene therapy.
While direct-to-consumer companies like 23andMe and Ancestry.com have helped popularize at-home test kits, the industry has been plagued by privacy concerns dovetailed by the Facebook-Cambridge Analytica scandal and reports about law enforcement using public DNA database to solve crimes.
Church’s new startup wants to capture the next wave of consumers by regaining their trust.
Launched last year, Nebula Genomics raised $4.3 million in seed investment and has yet to validate its business model as it seeks to attract both consumers and researchers to its data-sharing platform. The company doesn’t disclose its user statistics.
‘Anonymous Sequencing’
Co-founded with fellow Harvard researchers Dennis Grishin and Kamal Obbad, Nebula has developed a Blockchain-based genomic platform, where users decide who gets access to their data and potentially receive compensation for sharing it.
The startup also offers “anonymous sequencing,” which bypasses personally identifiable data such as name, address and credit card information.
“We’re working towards building technologies that enable consumers to get all the benefits of having their genome sequenced without having to worry about whether their data is being used ethically,” Kevin Quinn, the chief technology officer at Nebula Genomics, told Karma. “We provide a transparent solution to know exactly how and when Nebula might interact with the user’s data.”
Personal genome sequencing holds the key to the future of preventive and personalized medicine. Sharing that data with researchers could help pinpoint the causes of many diseases and accelerate new therapies and drug discovery, according to Quinn.
Consumers’ fascination with ancestry, growing demand for preventive care and decreasing costs of DNA testing have spurred the market that is expected to reach $15.9 billion by 2025 from $4.15 billion in 2016. More than 26 million people added their DNA to four leading commercial ancestry and health databases, which usually offer partial analysis, known as genotyping.
Meanwhile, venture investors poured $2.52 billion in U.S. genetics companies in 2017, up 142% from $1.04 billion in 2016, according to a joint report by PricewaterhouseCooper and CB Insights.
Privacy Concerns
But recently the hype has been cooling off, with Illumina, the dominant maker of DNA sequencer, signaling a “weakness” in the direct-to-consumer genetics market. Earlier this year, 23andMe’s CEO Anne Wojcicki attributed the slowdown to mounting privacy concerns.
Law enforcement last year solved a 30-year-old cold case of the infamous “Golden State Killer” thanks to a DNA match on a public genealogy website. Meanwhile, pharmaceutical giant GlaxoSmithKline purchased a $300 million stake in 23andMe, gaining access to company’s genetic data to develop new drugs, which also alarmed bioethicists and consumer advocates.
Nebula’s survey of over a thousand people has found that affordability and privacy concerns are the main reasons why people haven’t had their DNA sequenced. Many are also worried about discrimination. While the Genetic Information Nondiscrimination Act protects individuals when dealing with employers and health insurance companies, it doesn’t apply to life insurance, disability insurance and other areas, such as education and housing.
Nebula uses Blockchain technology to offer users permanent ownership of their genomic data on a publicly-readable ledger, which enables controllable and transparent data-sharing. The information is protected against misuse and hacking through an encryption scheme with multi-party access control, the company says.
Nebula’s Solution
Nebula’s anonymous sequencing aims to address privacy concerns through a payment solution.
The company encourages clients to pay with cryptocurrencies or prepaid credit cards to hide their identities. The startup offers sample collection via USPS PO boxes and recommends setting up an encrypted email and a VPN during purchase and registration.
“While purchases of genetic testing services can be effectively anonymized, genomic data itself cannot, since it contains unique, inheritable genetic markers,” the company says on its blog. “Thus, because genomic data anonymization alone is insufficient to protect privacy, genomic data sharing must occur in a controllable, transparent and privacy-preserving manner.”
Nebula’s business model anticipates that drugmakers and academic researchers would eventually be willing to pay for data that meet their specific criteria. This year it added a “sponsored sequencing,” which offers customers a free test if they let Nebula share their data with pharmaceutical partners.
However, the idea that most people will be paid for their DNA by researchers sounds unrealistic to Bob Gellman, an expert in privacy and health confidentiality and a former House of Representatives staffer.
“Maybe some big pharma companies might, but I’m skeptical,” Gellman told Karma. “They certainly won’t pay if they don’t have to, and there are free sources of much health information, including DNA.”
Last year, Nebula raised a Series A investment from 10 venture capital firms, including Khosla Ventures, Arch Venture Partners and Mayfield. It forged a partnership with Veritas Genetics, also co-founded by Professor Church, which offers the entire genome sequencing for $599.
Nebula is competing with other companies on a mission to protect and productize DNA, including an Israeli startup Digital DNATix and London-based Genomes.io. The global Blockchain in the genomics market is expected to reach $5 billion by 2029 from $15.7 million last year, according to ResearchAndMarkets.com
“We’re working towards building technologies that enable consumers to get all the benefits of having their genome sequenced without having to worry about whether their data is being used ethically.”
In August, Church apologized for having meetings and phone calls with disgraced financier Jeffrey Epstein, saying that he didn’t know of the extent of Epstein’s alleged crimes and interest in eugenics, according to STAT News. Epstein had donated money to one of Church’s labs, according to the report.
Nebula’s approach may help address users’ concerns, but it’s not a panacea for all ethical and privacy issues in a rapidly evolving space.
“By giving the consumer some control over who can access their genomic data, I think Nebula Genomics’ model is a step in the positive direction,” Jinchuan Xing, associate professor in Rutgers University’s Department of Genetics, told Karma. “I don’t think using Blockchain can fully make a sample anonymous and solve the privacy issue, but it will help to reduce the risk. I’m interested in seeing how their business model develops in the future.”
