3 Blockchain Startups and 1 Big Move to Patient Data Ownership

C. Gourarie
JULY 17, 2018
nebula genomics,genomic data blockchain,george church nebula,hca news

Blockchain’s DNA Explosion

Several companies are already vying for control over the nascent genetic data industry. In 2015, researchers predicted that over the next decade, the amount of genomic data will outgrow that of YouTube. That tsunami of information is poised to fuel everything from precision medicine to artificial intelligence (AI)-generated pharmaceuticals, as well as yet-to-be discovered areas of medicine.

Nebula Genomics hopes its model will make for a smooth transition. The company—launched by Harvard graduates and endorsed by George Church, PhD, a co-founder of the Human Genome Project—aims to remove the two biggest obstacles that stop people from sequencing their DNA: cost and privacy concerns.

Nebula will offer whole genome sequencing DNA for $1,000 and exome sequencing for $300. Costs might decrease even more in time, says co-founder and CEO Kamal Obbad.

Concerns about who will own and control the incredibly sensitive DNA are another obstacle. Currently, companies like Ancestry and 23andMe own and profit off customers’ DNA. “People are already making money off your data on secondary markets,” says Obbad. With a company like 23andMe, “if you sign their terms and conditions, you’re effectively signing away your data to them to monetize as they see fit,” he adds.

Nebula plans to flip that model and put individuals in charge of their own DNA, allowing them to profit from it. Nebula’s blockchain-based platform will allow data to be securely stored and shared with researchers, universities, and pharmaceutical companies, which will pay for access. Patients will retain the rights, and industry will benefit, Obbad says.

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“Researchers are spending a lot of money and pharma companies are spending a lot of money creating data sets that they could effectively be mining from existing biobanks,” he adds. “There are 300 million biosamples in the United States alone. Can we make those more discoverable? Can we create a liquid marketplace where you can identify these samples, potentially identify genomic samples that are paired with rich clinical data and use this to inform research decisions and clinical trial design and drug design?”

All transactions on the platform will occur in a digital currency specific to the platform. Users will be compensated in tokens for uploading or sharing their data with customers. The tokens can be held, traded for other digital coins on cryptocurrency exchanges or exchanged for fiat currency.

Similar companies include EncrypGen, Shivom, and Luna DNA. There are also companies that already pay for customer DNA, including DNAsimple and Genos, but don’t plan to build a blockchain-based platform.

As in every nascent space, the proliferation of companies, universities, and nonprofit groups attempting to build DNA databases could lead to fragmentation, which would undermine a crucial reason for their existence. But it’s the start of the race, and it will be some time before it’s clear which of these competitors pulls away from the pack.

An important decider will be how well the company or group can work with varying kinds of medical data. Genetic data are not useful to health providers or researchers without accompanying phenotypic data: information about traits and conditions. These data exist in surveys, blood tests, wearables, and self-reported tracking, which are messier. They are more difficult to verify and already subject to the vagaries of the existing healthcare infrastructure.

That’s one reason that Nebula joined forces with Longenesis, a company aiming to build a one-stop marketplace for all kinds of medical and personal data.

How Much Is a Selfie Worth?

Longenesis is a Hong Kong-based joint venture between two companies in different industries: Insilico Medicine, an early player in AI for drug discovery, and Bitfury, a blockchain outfit. Longenesis aims to build a blockchain-based marketplace for medical data, giving users incentive to upload selfies, DNA, Fitbit data, and more.

While the marketplace forms the core of its model, Longenesis plans to add a layer of analysis on top of the data, with the AI expertise of Insilico and one of its partners, Neuromation. The analysis won’t be limited to specific diseases but to overall health and longevity.

The key, says Emil Syundyukov, Ph.D., a deputy director at Longenesis, is providing a framework in which many disparate types of data can be combined and correlated in ways that haven’t been done before. He and his colleagues hope to merge demographics, genetic data, lab work, and lifestyle tracking, providing new avenues for research.

>> READ: Mayo Clinic Is Partnering With a Startup to Make Blockchain Work for Healthcare

Longenesis views aging, for instance, like a disease that, if understood, can be prevented or delayed. Something like a daily stream of selfies—which aren’t currently recognized as medical data per se—could provide indicators regarding skin quality, age predictors, and other crucial information to understanding the process of aging.

For the patients, Syundyukov says, the value lies in their ability to track their own risk levels for various diseases, as well as how their lifestyle affects those risks. For providers, the tech will provide an updated analysis of the patient’s medical history and risk factors, leading to better diagnoses and better care.

If the models of Longenesis and similar companies work, they will create a data economy with implications that will become more apparent with time. For one, there is the question of how to price the data. The genetic data of people with rare diseases will be very valuable to drug companies and researchers, for example, while some customers will be interested only in data from older patients, babies, or people of certain ethnicities or regions. The value of some data deteriorates with time, while others are valuable only within certain contexts.

And once there’s an opportunity to profit, there will be incentive to game the system. Which means that companies will have to provide a system of validation and verification that the data are accurate without compromising privacy.

On the other hand, there will be incentives for powerful companies to leverage these marketplaces for access to data. Already, some employers reward employees for participating in wellness programs, and there’s an uneasy culture between data tracking and the ways powerful forces can exploit it by restricting access or requiring participation in certain programs.

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