IIn 2017, Harvard University’s genomics pioneer, George Church, and two young scientists launched Nebula Genomics, a sequencing service that focuses on transparency regarding the use of genomic data. To draw attention to issues of data ownership, the company is putting the Church’s genome up for auction as a non-fungible token (NFT), a form of cryptocurrency that proves possession of a digital or physical object and has rocketed with the rise of the blockchain- Technology gained popularity in recent years.
One of Nebula Genomics’ graphics options is being auctioned off at NFT by George Church
Church’s genome was the first to be sequenced, and it was the first to be made publicly available along with his medical records, multiomics data, and other information as part of the Personal Genome Project (PGP) he launched in 2005, “The NFT wasn’t my idea, but hopefully it’s a good idea, “Church wrote in an email to The scientist“Both for the auction winner and as an event that will fuel conversations about the DNA reading and writing revolution.” In Church’s case, the NFT will contain his publicly available genomic data along with a piece of art that describes the location of the data. According to Kamal Obbad, co-founder and CEO of Nebula, NFTs could provide genomics consumers with a secure way to sell or license their data that they haven’t otherwise shared.
The exact date of the auction will be announced on April 25th in celebration of National DNA Day. The scientist spoke to Obbad about the move and what the company is hoping for from it.
Kamal Obbad: In the past, privacy concerns have plagued the consumer genomics industry, as many customers have long failed to realize that during a consumer test, they frequently de-signed your data for licensing by a pharmaceutical company or being used by a third party. Over the past few years, this has made headlines about how consumer genetic companies are monetizing data, and it has become a business where the data is the product, not the actual DNA kits and not the actual reports we give to users. So at Nebula Genomics we wanted to start a different type of Personal Genomics business that was really user-centered and more focused on providing the user with a good product rather than just trying to aggregate and aggregate as much data as possible collect to make money there. . . . We never share data with third parties and only sell genetic tests and reports directly to users.
KO: Yes, we have carried out projects in the past where, for example, a research institution or a pharmaceutical company would offer to compensate users in return for data or in return for paying for their genetic tests. Kind of like a sponsored sequencing project. . . . We also enable our users to pass on their data to third parties if they want to use additional services. For example, if you would like more detailed information about ancestors, we have integrations with third parties where you can share your data with them. However, this is not done by us and will never be passed on to third parties.
KO: We have looked at NFTs for a while as it is an interesting mechanism for storing ownership of data and tracking the release, sale, or licensing of that data. Today’s use cases have really focused on art, like music and visual drawing and the like. And we thought genomics was an interesting use case too, as a genome on its own is really a non-fungible digital asset. And different genomes will have different inherent values.
For example, if you’ve been a rare disease patient, then your genetic data can be very useful to a pharmaceutical company as this genomic data can help you determine what might be causing this rare disease, or what a successful treatment might look like compared to a completely healthy person, their genome might not be so valuable.
KO: We hope it really starts an interesting conversation about how genomic data can be shared in a more transparent way. For some contexts, George published the data a long time ago through the Personal Genome Project. So it’s essentially a public database that anyone can log into and share your genome and health data. Scientists can use this database for research purposes. George has always been a great believer in providing health data to researchers, and was a great practitioner of it himself. So the idea of the NFT is, can we explore a new way of doing this through an NFT that includes monetization? Can we possibly provide an example of a future model that Nebula might use to determine how users can share or license their data to third parties?
KO: I think the value is very similar to other NFTs. Many NFTs today, while the digital media is freely available online, are treated almost like collectibles. You have the collector’s item of the original NFT that was sold for all data, whether it was a piece of music or a work of art. So it is very similar with George’s genome. This will be the only NFT George does with his DNA, so it has the same collectible aspect.
In the future, however, this could be something that people who are not part of the Personal Genome Project do as the first opportunity for them to make their data available and also get compensated. The interesting thing about NFTs is that you can track how they are transmitted over time. . . . While this won’t be the case with George’s NFT, as we only auction it once and everyone who owns it will own it, it’s an interesting model of what could happen in the future, where you might actually be able to get one License fee for each time your data is licensed or sold to someone else.
KO: I honestly have no idea. I think there is a wide range of what it can potentially be sold for. I think there is some cultural significance to George’s DNA as he was one of the people involved in the Human Genome Project and one of the first human genomes to ever be sequenced. But your guess is as good as mine.
KO: We’re giving some to charity, and the rest really rests with George.
editorNote: This interview was edited for brevity.