By Kamal Obbad
Today I was at the Health 2.0 conference to present the platform our company, Nebula Genomics, has built to help usher in the era of personal genomic sequencing.
We’re absolutely thrilled that the audience chose Nebula as the Launch! winner after seeing how the our platform and genomic data marketplace will work and how that addresses some of the biggest issues facing researchers and the entire industry today.
Right now, if researchers want access to large-scale genomic data, they have two problems. The first is that the available data is fragmented across different (and often incompatible) databases, making access extremely difficult and expensive. The second is a shortage of meaningful data, because consumers are reluctant to share data because they lack trust.
Our platform addresses both these issues.
Nebula has developed a trustless genomic data marketplace, built on a decentralized system with blockchain. This platform enables data owners to share their genomic data — the entire genome, not a sample — with researchers or other data buyers while still maintaining control and privacy of their data. We’ve also turned the economic model on its head. With the Nebula platform the data owner is compensated, and the data buyer pays for the value they receive.
Individuals who want to join the Nebula marketplace will use our portal to create a record with information about their overall health. The data isencrypted to ensure it is private. Data buyers like researchers will be able to use the portal to initiate a search for records that meet specific criteria. The data buyer only knows whether or not there are matches; they never see the data, nor do they know the identity of the individuals connected to those records.
Data buyers can then initiate a transaction via the platform’s marketplace by creating an offer of compensation to the individual, via the blockchain. If the individual hasn’t yet had their complete genome sequenced, the buyer may offer compensation for that process, which also can be arranged via our platform. If the data owner accepts the offer, the platform will execute the transaction and then provide the mechanism for analysis of the data.
Throughout this process, the data owner has full transparency and control. They will be able to see who is making the offer, the value of that offer, and the purpose the buyer has for the data. It’s entirely up to the individual whether to accept or not based on the value of the offer or the purpose of the request. The buyer, on the other hand, never knows the identity of the owner and is never given access to the “plain text” form of the data: Everything is done inside the platform.
By giving individuals control, privacy, and compensation for their data, the Nebula platform provides strong incentives for consumers to sequence their genomes and provide researchers with access to them. That’s what it will take to get to the scale of data that will be meaningful for research. Data buyers, in turn, will get cheaper and easier access to large scale data without worrying about security or dealing with countless incompatible sites and middlemen, accelerating advances in research, drug development, clinical applications, and personalized medicine.
We’re already working with partners like Bitfury, Insilico Medicine, and Veritas Genetics to provide a range of analysis tools and health data integration via our platform, and we’ll be announcing more partners and marketplace participants in the near future.
If you want to learn more about what we’re doing and how it’s going to change medicine, visit our website at https://www.nebula.org.