Exclusive: When Blockchain Technology Meets Genome Sequencing

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By Jessica Yangon Nov 06, 2018
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A lot of money has been spent plumbing the depths of the human genome, in order to understand the relationship between gene and disease and advance medical research. Few people have had their own genome sequenced, however, because of the cost and because of privacy concerns about how their genomic data is sold and used.

With the introduction of blockchain technology in the genome sequencing field, that is changing. Blockchain technology makes it possible to build a platform where people can connect directly with researchers while maintaining individual privacy and keeping control over their own data, and eliminates the need for a middleman.

In a recent interview with Cryptonews Hub, Dr George Church and Dennis Grishin, Co-Founders of Nebula Genomics, discussed how their company is adopting blockchain technology to address these issues and create a platform for sharing genomic data that meets the needs of individuals and researchers alike. Dr. Church is very optimistic about the Chinese market in particular. He notes that because of the one-child policy in China, many people here are very eager to have their genome sequenced compared to markets such as the United States.

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Here’s the full transcript of the interview. (J- Jessica, D- Dennis, G- George)

J: Please briefly introduce Nebula Genomics and the recent progress you have made.

D: George has been trying for many years to have personal genome sequencing take off and have all consumers and patients sequence their genomes. In order to do that, we are trying to address a few obstacles. We are trying to solve the cost issue by shifting its cost away from consumers and patients towards pharmaceutical companies. Another big issue is privacy concerns and that’s also where blockchain comes in, as it enables very transparent efficient content management that gives people full control over who accesses the data and for what purpose it’s used. In terms of our latest developments, we recently raised a funding round and right now we are working towards launching our first consumer/patient-focused product that you will be able to use to sign up for personal genome sequencing

J: What strengths and weaknesses does Nebula Genomics have compared with similar organizations in the market?

G: So one advantage of Nebula Genomics is that we are not only capable of but we’re totally integrated with whole genome sequencing. So many others, either they don’t do sequencing themselves at all, they just hope that somebody else is doing it. We have a close relationship with Veritas Genetics, which is another one of the companies that I started, which has almost four years of experience providing interpretation of whole genome sequencing, which in my opinion is much better clinically than anything else. So that’s one advantage. The other advantage that we have is how we combine blockchain with encryption technologies.

D: What George is referring to is that we not only use blockchain but a number of other technologies that also contribute to data protection. As George said, blockchain technology will provide transparency and control, while other technologies like encryption enable some data privacy and protection. So that when you allow someone to use your data, you are protected. For example, it allows for secure queries and later on more sophisticated computations on encrypted data.

J: What kind of profit model is Nebula Genomics based on?

D: As I said, the idea is to have the pharmaceutical companies pay the sequencing costs. They will recruit the people, the cohorts for the studies, from our online platform and pay the sequencing costs so they can get access to the data and through that the pharmaceutical companies would be paying for from those individuals. We built the infrastructure to enable this connection, and as this infrastructure provider, we will be taking small cuts on those transactions. So we essentially can speak of a marketplace for genomic data, if you want, and we are also the ones who have built the marketplace. It is just one of multiple ways for us to make profits but is kind of the most straightforward one.

J: Which regions/countries are your main market? Do local laws or regulations restrict the trading of genomic data? If so, what countermeasures do you have?

D: Well, as of now it’s mostly U.S. but through Veritas Genetics we have a strong connection to China.

G: In principle we can do it in any country as long as they permit it. But probably the first, the main markets, will be in the U.S. and China.

D: Decentralization actually helps us address government regulations when it comes to genomic data. For example, the Chinese government doesn’t allow a clinical genomic data of Chinese citizens to leave China, or be stored somewhere else, but our platform is essentially decentralized; it keeps the data in different places and just brings computations to the data. In this way we can meet those government regulations and still make data that’s stored in different countries available to researchers on a single network.

J: Since the concept of genome sequencing is not prevalent, what are you going to do to attract more participation to increase the volume of data?

D: We have to be able to offer sequencing at a greatly reduced price so people who haven't been sequenced yet can just sign up to the platform when we launch. If they provide some information about themselves we will try to match them with pharmaceutical companies who will pay the cost. And that’s one big thing that will hopefully motivate people. The other one is data privacy. So by sequencing through us, people can retain control over their data while still being able to contribute to research and studies, and that’s really important. And so we hope through this approach to address the concerns that large numbers of people have today that has deterred them from getting sequenced.

J: If you have already carried out some promotional activities, do you have any data that shows how effective your promotion methods were?

D: What we are doing right now is engaging with a limited number of people to just see whether our value proposition resonates with them, and it looks good.

G: Yeah, I mean, we have some idea of how well the Veritas Genetics model works. And that’s mostly clinical. And it’s working well and we think this one will explode beyond the clinical because people have been waiting and it’ll be much easier to communicate when the price is close to zero. So I think we don’t know the simple answer to how that promotion will work, but I think it’s fairly predictable. It will work better than anything prior to it. I mean, we want to get a billion people, but whether it’s sufficient to get to a billion people, we don’t know, but it’s probably going to be better than anything else.

D: One important data point that we have is the interest in genetic testing in general has actually been growing exponentially. It remained somewhat flat before, but in the past one and a half years consumer interest has been increasing steadily. So it’s the right time to go essentially beyond those limited genotyping tests and really launch a platform that offers whole genome sequencing and lets people take control of their data, and get compensated for data sharing.

J: Will Nebula Genomics conduct any genetic studies based on genomic data provided by users?

D: Well, our model is essentially that we do not take ownership of people’s data, so we cannot just take the data and conduct studies on it. But we will be supporting studies conducted by others and some of them might be initiated by us. But what’s important is that every study will just only happen with the permission of the data owners and never without it.

G: Even when they give permission, they won’t necessarily be giving away their data, they will be giving away the ability of the company to learn something from their data. But the company will not necessarily get data itself.

J: How do you manage and store users’ genomic data to make sure it won’t be controlled/affected by certain network nodes?

D: Well we have a bioinformatics platform that has actually been in development for many years. It already supports distributed storage and distributed computation and adding blockchain to it. It is a full-scale bioinformatics platform that you can use to store data and perform whatever computations researchers like on the data.

G: The platform, because it’s open, it’s been very well vetted by people all around the world and Nebula can come on top of that—they’ve got three years of Veritas experience plus some years in my lab as well. So I think that’s pretty solid.

D: I think it’s only one of the few open source bioinformatics platforms and it has all the features that we need to do integrations with a blockchain. You know it’s the perfect choice for us.

J: It is said that there are tens to hundreds of gigabytes of genomic data for each person. If there is an explosion in the number of users, how can you guarantee the scalability of the data storage network? Will you consider using cloud services from technology giants, such as Amazon Cloud?

G: One thing I just want to clarify that this number, hundreds of gigabytes, is not necessarily true for high quality data. So high quality genome sequence can be compressed to three megabytes, not gigabytes. So a factor of ten thousand or a hundred thousand less than the biggest numbers. The biggest numbers refers to raw data that’s stored, just in case you can do better in the future. But the cost now is so low and the quality is so high that you can compress it, throw away all that raw data. That’s one thing that already buys you a factor of ten thousand or more. I guess the question about the cloud is, is it a security risk, right?

D: We have the ability to deal with big data, such as raw sequencing data that comes out of the sequencing machines. We will be using clouds, commercially available clouds, but the important point is that the data will be stored on those clouds in encrypted form. So whether it’s Dropbox or Amazon or Google or whoever, they will store the data, but they won’t be able to read the data as it will be encrypted and queries and such will happen on the encrypted data.

J: When Nebula issues tokens, which are used to pay for fees related to genome sequencing and personal genomic data collection, individual users and pharmaceutical companies can use fiat currencies to purchase tokens, which are used to pay for fees related to genome sequencing and personal genomic data collection. If tokens are circulated in the secondary market (exchange), the price will fluctuate. The fluctuation in the price of the token causes a fluctuation in the procurement cost of genome sequencing services. Buyers (pharmaceutical companies), especially large pharmaceutical companies which make huge purchases, may not be happy to see this.

D: Price fluctuations is an issue that essentially all tokens that blockchain companies have. But I think what’s important to keep in mind is that the product we are selling, whether it is the sequencing itself or the access to the data, has a value that does not fluctuate sporadically. And in regards to pharmaceutical companies, the way we built the platform is to essentially make the tokens and the blockchain become invisible to them. It will be just the underlying architecture that will run the platform.

J: If the token price plummets, it will discourage individual users from providing genomic data. Do you have any methods to prevent token price volatility from having a negative impact on individual users and pharmaceutical companies?

D: Users will be able to earn tokens for sharing data access and then they can decide what they want to do with these tokens. There will be many opportunities to spend tokens in the ecosystem, you know, for purchasing sequencing, purchasing interpretation services, later on purchasing services from third parties and so on. They can also leave the ecosystem and in some way monetize tokens, and it would be just up to them at which time point they want to do that.

J: How do you view China’s genome sequencing market? Do you have any plans to develop the Chinese market?

G: I’ve been involved in China’s genetic sequencing market since the very beginning. I think it’s a terrific market, the Chinese people and government really understand the value of genetics, which is different in the United States—the United States has been warming up more slowly. Both countries are ahead of most the rest of the world but I think China is an amazing place for genetic sequencing. I think part of that is a consequence of the one child policy, that people care very deeply about the health of their children. I think another thing is that people here are willing to, here in China, are willing to pay out of pocket for this sort of thing, while the United States, people seem unwilling to pay a small amount of money for their genome to be sequenced when they will pay the same amount for many other things. So, overall, are there any plans to enter China, I guess is your question. Veritas Genetics is the third company I have been involved with in China, and so it’s essentially already in China. So the answer is yes. And it could involve multiple partners, if that’s advantageous.

D: Our company, by definition, from the starting point, is an international company, because we’ve been in a decentralized network where everyone can join from anywhere and contribute genomic data.

Cryptonews Hub is an emerging blockchain media and information services company specializing in crypto assets. Its team of experts is committed to editorial independence and journalistic professionalism, providing key insights on the latest developments involving cryptocurrency regulations around the world and innovations in blockchain technology.
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