Nebula Genomics’ Co-founder took time out of his busy schedule to talk to Coin Rivet. The project utilises blockchain to help patients sign up to the widescale genome-mapping research company.
Coin Rivet: This project is very exciting, and in fact crucial to genome research. Do you think people will sign up?
KO: We are excited about it, too. Right now, we’re figuring out the business model and the demand for genomic data.
Pharma companies, especially, are starting to look into this. There has been exponential growth in personal genetics and we’re at an inflection point where more and more kits are being sold.
We’re making a bet that this is going to take off, and what’s going to become very important is the idea of user-owned, or patient-owned data. That’s the key to creating data sets that haven’t been contextualised before.
For other research projects, that’s a huge overhead. Here, we’re trying to build a system where users are engaged, where we give them incentives to participate, and where they get properly rewarded for contributing research.”
He says research is being held back as many of the existing companies on the market are “charging you while they turn around and resell your data, sometimes without your informed consent.”
People are concerned about giving up their DNA to a third-party and letting them do whatever they want with it, “and they should be”.
“We’re focused on people who not only want to get their genome sequenced, but who want to own their data, and get a cut of the value it generates. The way to start is to make it cheaper, and even free, for people to get whole genome sequencing.”
Coin Rivet: How can you reassure people on the issue of privacy after the Cambridge Analytica scandal with Facebook?
KO: Privacy concerns are even more significant to people when you’re talking about something as personal as genetic and health information. Our platform was designed from the outset to protect the privacy of that information. It’s more than that, too – we give individuals ownership and complete control over how their data is shared and used.
He says they are both using both blockchain and encryption-based technology and privacy-enhancing technologies on their platform.
“Together they give people the ability to know who’s asking for access to their data and control whether or not to that access. It also ensures that their data remains private even while its being shared.”
Coin Rivet: Why have people not previously bought into the idea of having their genome mapped?
KO: It took decades to map the human genome, and then even more research to get the price of full-genome sequencing down to where large numbers of people can afford it.
While we’ve got prices to a mass-affordable point, though, we still have to overcome the rest of the obstacles to participation – namely, privacy and control.”
His colleague George Church predicted we’ll be living in genomic age by 2020 and “the momentum is there.”
Coin Rivet: Do you think people will trust it due to the blockchain tech being used?
KO: We think about this another way – we’re creating a trustless platform. What I mean is that you don’t have to trust Nebula, or anyone else on the platform.
Because of blockchain, you have verifiable proof that Nebula doesn’t have your data.
If you’re super security-conscious you can check for yourself. If not, you can use our web app. We have our own native blockchain that has a very seamless integration with typical web 2.0 experiences. In fact, most consumers won’t even realise we’re using blockchain, and they don’t need to.
Blockchain is used as he says it lets the company connect researchers and consumers directly.
Because it has an immutable public ledger “for documenting transactions and consent, individuals have transparent consent management.
Both are key to “addressing major issues that keep people from sharing their data today, namely trust and privacy.
Coin Rivet: What are the potential health benefits for people who sign up?
We’re starting by giving ancestry and polygenic risk scores. We’re giving interesting trait prediction that’s not health-related.
They look at general happiness, sleep quality, aspects of athletic performance, personality traits, physical appearance and BMI.
Survey questions ask about health, medications, diet, smoking and drinking, occupation and physical activity.
But as our Co-founder George Church says, our launch is just the first step toward the future. As we gather more genomic data, and as more individuals undergo much more detailed sequencing, researchers will be able to come to a single source for the kind and scale of information they want to develop predictive, personalised medicine.
It is the first time blockchain technology has been used this way.
Coin Rivet: As I understand it, people earn more credits the more information they share about the health.
KO: Yes, that’s correct. We have a number of individual questionnaires that ask about your health, medical history, family medical history, habits and tendencies. This is data that would be useful to researchers that want to see how different things influence disease. We’re building integrations to move other types of data over time, like Fitbit data, or possibly we’ll be collecting microbiome data or data about your diet.
A lot of phenomic data can complement genomic data. We reward users for sharing this type of data and as a result making their genomic data more valuable.
We give you Nebula credits for each series of questions you answer. Earn enough credits, and you can redeem them for free genome sequencing. They can be redeemed for a variety of other offerings. Also, individuals who share information about their health will also have the chance to attract researchers who want access to their genomic data, and will pay their sequencing costs.
Coin Rivet: How can they be assured that their privacy will be protected as they share more information?
The same technology protects your privacy no matter how much information you share. As I said, we’re building a system where you don’t need to trust us— you have transparency and complete control.
Nothing happens without your explicit, informed consent, and the chance to get compensated. That’s the only way we’re going to get past the barriers to wide-scale participation.
Look, a lot of consumers don’t realise their health data is being sold already, and they have no control and certainly aren’t getting any of that value.. The current business model doesn’t make any sense. Imagine if you paid a fee to use Facebook, but they went ahead and sold your data to advertisers anyway? There would be uproar. That’s what’s happening in personal genetic testing today: you are paying them to collect your data and sell it later for more money.
Coin Rivet: How important is it to keep ethics at the forefront?
Genomics is still a largely untapped field. We don’t have a full understanding of what can be done with genomic data and what the risks are to individuals if their genomes get in the wrong hands.
At Nebula, we spend a lot of time thinking about how we can best protect your genomic information and keep you in control of it.
He says there is a tough trade-off “because we want people to be incentivised to share genomes for the betterment of medicine but we also want people to be able to keep their genomic information private.”
Coin Rivet: Is lack of support from the public slowing down advances in research?
Our belief is that genomics has enormous potential to transform healthcare and usher in the age of personalised medicine.
While the technology exists to make this future possible, what’s missing is access to the large-scale, aggregated genomic data researchers need.
We want to make access to that and other vital health data a reality. The first step is incentivising people to get sequenced and to share their data.