Sequences For Sale: Blockchain In The Genomics Market
Blockchain, the technology behind bitcoin, has a surprising degree of relevance for healthcare. It has already found real-world applications (and potential ROI) in reducing the time it takes to credential physicians and underpins an emerging decentralized marketplace for the exchange of digital services and currency. It is also driving collaboration and creative problem-solving around some of the industry’s most vexing cost and quality problems, and ongoing shift toward more patient-centered, outcomes-oriented care. In this series of stories, Clinical Informatics News writer Deborah Borfitz looks into emerging use cases for blockchain in health care and clinical trials, and speaks with some of the companies breaking new ground. --AP
By Deborah Borfitz
May 8, 2018 | While some groups are working to bring blockchain to clinical care, George Church plans to use the technology for carrier-status matchmaking. Church is co-founder of Nebula Genomics, a startup creating a way for individuals to reap the benefits of making their genetic information available to pharmaceutical and biotech companies. People will be able to anonymously share all or a portion of their genomic data to researchers via the blockchain in exchange for cryptocurrency called Nebula tokens.
Nebula Genomic’s co-founder George Church is also founder of Veritas Genetics, which offers whole genome sequencing for under $1,000—the world’s lowest price point. The sequencing fee is likely to be covered by buyers if the seller happens to be among the 5% of the population who are genetic carriers of a severe disease or defect, putting their genome in particularly high demand. If the individual is of reproductive age, a hospital might also be interested in footing the bill, Church adds.
Providing a means to subsidize the cost of sequencing, and for consumers to get paid for renting their data, are just two of the unique aspects of the blockchain startup. Nebula Genomics also offers consumers private storage of their personal data, and researchers peace of mind that data security is a top priority of the computational platform, Church says.
Those most motivated to get their genomes sequenced are people of reproductive age who will potentially have children, to determine their carrier status for genetic variants that can cause inherited conditions. But given the low odds of being a carrier, they’re unlikely to pay for the sequencing cost without the prospect of compensation. “It’s kind of like seatbelts—a good idea but a social pact was needed before pretty much everybody started using them,” says Church.
Next in line will be those who care about research, especially if they’ll be compensated for their data or if certain diseases run in their family. A distant third would be people speculating that the value of genome sequences will rise as more third parties need the data to conduct studies or develop apps to advance medical research, track and diagnose patients’ conditions, and participate in clinical trials.
“Some people don’t want to know their own data, but they can still possess it and can change their mind,” says Church. “Often people only want to know what is medically actionable, and we’re set up to securely accommodate those preferences.”
The supply side of the equation for Nebula Genomics is admittedly weak. “It’s a pathetic market,” says Church. “At every talk I’ve given for years now—be it to a lay audience or a group of investors or scientists—it’s always the case that less than 1% have had their genome sequenced.” But it only takes a few people to turn a profit for the overall healthcare system, and the nascent infrastructure might be a way to nudge more people (if not Church’s hoped-for 99%) to spit in the cup.
While some studies will require tens of thousands of genomes, he adds, some “very cool” experiments on causality can be done with “n” of 1 or 2. Investigators will need healthy controls, but the bigger need is for very specific combinations of people, such as those who are super resilient to the vagaries of life or have a specific disease.
The blockchain will be used mainly for “security and transaction enablement,” Church stresses. The beneficiaries will include not only individuals earning the currency, but also families spared the emotional and financial toll of deadly newborn diseases that can be prevented via genetic counseling and matchmaking. The health system will also be saved the care costs for affected babies, which are 16 times greater than the price of the sequencing.