David Koepsell is the co-founder and chief executive officer of Encrypgen, a software company creating next-generation blockchain solutions for genomic data, and the co-founder of Blockchain in Healthcare Global, a new trade association mitigating risks and barriers to adoption of blockchain and converging innovations in healthcare and the life and social sciences while advancing progress in scientific replicability, medical ethics, human rights, and global inclusion. Among other positions, Dr. Koepsell was previously Donaghu Visiting Scholar at the Yale Bioethics Center, where he did a post-doc in bioethics and medical ethics. He is the author or editor of 13 books, including Who Owns You (2009), which was lauded by Nobel Prize winner John Sulston as a “lucid and compelling deconstruction of current practice in the patenting of human genes, exposing inherent contradictions in the process and offering practical ways to resolve them.” He has provided commentary regarding ethics, society, religion, and technology on: MSNBC, Fox News Channel, The Guardian, The Washington Times, NPR Radio, Radio Free Europe, Air America, The Atlanta Journal Constitution, and the Associated Press. He is an associate editor of Free Inquiry magazine and serves on the advisory board of the Center for the Study of Innovative Freedom.
The Politic: Tell me a bit about how you got involved in blockchain and your work at EncrypGen!
David Koepsell: Ever since I did my Fellowship at the Yale Bioethics Center, my background for most of the past decade has been mostly in bioethics and policy. I was in Holland for six years at Delft University of Technology, where I taught in the areas of engineering, bioethics, technology, and also a bit of synthetic biology and nano-technology. I was broadly focused on issues of human research ethics.
I started getting interested in blockchain while I was there, and I wrote my first bit for The Conversation on blockchain back in 2015. By then, I had moved to Mexico and was working as an advisor for the National Commission of Bioethics in Mexico. That being said, my interest in blockchain was more related to my long-term interest in the ontology of money. It was only later in 2016 that I started realizing there was a way to combine my interest in blockchain with my interests in bioethics, and specifically in the ethics of genomics. My wife is a genomic researcher specializing in pharmacogenomics, and she works at the National Institute of Genomics in Mexico. We had been collaborating on articles about genomic data, big data, and privacy.
I started to come up with this notion that we could use blockchain to combine our dual interests of allowing people to maintain ownership of their genomic data and making that data accessible for research. We started thinking about how to create a project, and that’s what we did: My wife and I co-founded a company. She still works in public science, so I run the company on a day-to-day basis now. But together, we built a product based on those ideas we expressed in 2016.
I think you’re the only alum in our Y-C&B series that works at the intersection of blockchain and bioethics. In the most publicly-digestible way possible, do you mind explaining the work you do at EncrypGen a little bit more– painting a sort of picture for the readers?
Yeah! The problems that we were trying to address with genomic data came out of the fact that in about 2013, the Supreme Court and other courts around the world decided you could not have any property interests in genomic data. They decided to get rid of gene patents, which, mind you, I’d advocated for a long time, so I was happy. But those legal decisions left a void, which meant that there was no way for anybody to exert a property interest in genomic data.
We thought this might be a problem for science because people would be less willing to donate tissues and data for scientific research. We considered that, maybe, we could solve some of these problems, relating to the issue of exerting property interests in genomic data, even in the case of Henrietta Lacks– somebody who contributed so much to science but went unremunerated for quite some time.
We considered that one way to create a sort of pseudo-property right would be to use a blockchain, which is similar to creating a “title” to something of value. What Bitcoin or any other coin in the crypto space does is that they indicate an ownership interest in a blockchain. Your ownership interest is about whether you control a key. We can do something similar with genomic data, and we can create a way to disseminate that data to scientists who need it for research while also allowing people to receive compensation for their data through blockchains.
Interesting, so how would Henrietta Lacks get paid today?
Let’s suppose that you could take anything in the world, assign some sort of unique ID to it, and record that unique ID on a blockchain. You then have a record of transactions and ownership. Henrietta Lacks, or anyone else who donates some cells, some tissue, or the data about those, would receive a key that associates their donation with the record of that donation on the blockchain. Anyone who uses that cell sample, for instance– their transaction would be logged on the donor’s private key, which needs to be coded internally. So, that transaction would relate back to Henrietta Lacks on the blockchain. and you could arrange for her to receive payments in the same way. You could track each of those transactions, and you could pay her some sort of percentage generated out of the proceeds that come out of her data.
That’s amazing. From an ethical perspective, might some people find it wrong that different people would receive different amounts of money for something entirely arbitrary, i.e., whether their cells or tissues just so happen to lead to profitable, medical innovation?
That’s an interesting policy question, and we could devise different ways of distributing the benefits and rewards of research. In the space of genomics blockchain, there’s a company that we’re competing with in the sense that they also remunerate donors for their genomic data, although I don’t actually think we’re taking business away from each other. They have different ethical goals: They’ve created a public benefit corporation, and everyone shares equally in the research profits from their database. So, that’s one way to do it, you could allocate all of those profits equally out of people. Another way is simply to track data on the blockchain and pinpoint which data points are valuable to whom based on transactions that flow from the ownership of that title. So those are just choices– powerful choices. That’s why blockchains are so helpful.
Ethically-speaking, I don’t see any natural preference for one or the other. It depends on your ethical perspective. If you happen to be a communitarian, then you might find the equitable distribution more palatable. If, like me, you happen to display more of a libertarian bent, then you might think the property right flows out of your specific donation, and that you ought to be individually recompensed.
It seems like genetic-testing companies like 23andMe would want to keep the profits of genomic data to themselves. Do they have an incentive to work with EncrypGen? Is that a plausible future?
I think that if a number of trends continue in the direction we’re seeing, then at some point, genetic-testing companies like 23andMe will have to sit up and take notice. More and more, people are starting to feel uncomfortable with companies selling data that comes from them. Of the 20 million people that have been tested by direct-to-consumer companies like 23andMe and Ancestry, I actually don’t sense that they have a good understanding of the value of their genomic data– how it’s being used by the testing companies mostly for the profit of the testing companies.
Even with non-genomic data, similar social platform issues come to light, as evidenced by Cambridge Analytica’s harvesting of Facebook data. I think people are becoming more wary and less apt to want to contribute their data to make these big companies wealthier, and I think they’re becoming increasingly interested in finding ways to profit from that data themselves. That doesn’t just pertain to profiting medically from the data, though that’s certainly one use case, but also to profiting monetarily from the data. If people continue to be more wary of third parties owning their data, and more interested in profiting from it themselves, and if our platform continues to grow in adoption, then companies like 23andMe will have to adopt something that we’ve done, or use something that we’ve created, to help respond to and benefit their customers.
How much is my genomic data worth?
That’s an interesting question. There’s actually a good demand for that data. Last summer, a client (GlaxoSmithKline) entered into an exclusive arrangement with 23andMe for $300 million so that they could access data from 23andMe. That’s a strong indication of the data’s value. Some researchers have also tried to figure out how much people would have been paid for that data. They came up with a figure of about $130 per person, so the individual costs of genetic testing would have basically been covered by compensation received for their data. That being said, you could also be extremely valuable if you have a rare genetic condition, or if you’re part of a pool of people who are particularly interesting for researchers to study. We don’t really know how much the data is worth, but we think that a free market is a good way to find out.
Most genomic data seems redundant and negligible in value, but I would guess that a small fraction of that data is extremely valuable. In your experience, how much skewing is there in the average value of data?
Like any marketplace, it’s unlikely that much is going to be terribly valuable, but again, we really don’t know. We’re on the ground floor of this kind of research. Even after the human genome was mapped, there still remains this huge project of sifting through as much of the data as possible; it’s taking time for us to accumulate reasonably large datasets. We’re opening the floodgates of accumulating such datasets affordably, and with these direct-to-consumer testing companies: We can now figure out whether the data is valuable and to what extent the data is valuable in the first place. I’m very curious to see how much this marketplace develops, and particularly in a free market manner.
I know that a lot of people in the crypto/blockchain space, like you, are to some extent libertarian. But it’s interesting that you have an academic background unlike many of them– do you find significant differences in your stand of libertarianism?
One of the differences is that I have a background in policy: I’ve worked on policy in many governments, and I’ve tried to steer policy in what I think is an ethical direction. Coming from that background, I don’t totally discount the role of governments in framing markets and policy. I think that they do have a role. That being said, where they don’t have a role is in making pricing decisions or supporting monopolies. I think governments’ best purposes are in regulating marketplaces, in terms of ensuring, however they can, that there’s a level playing field, that monopolies are kept in check, and that fraud is kept out from the marketplace. That’s a really important and valid role of governments. There are a lot of people who are deceived and lose money–or worse–through fraudulent manipulation of the markets. Governments play an important role in protecting consumers against those fraudulent activities.
A lot of people say they want “privacy” when it comes to their data, but in many cases, it seems that what they actually want is “control.” To what extent do you think it’s really privacy that people want?
I think I’m kind of cynical about the public’s view of privacy. First of all, my sense of what “privacy” means somewhat differs from where other people are trying to take it. I don’t think there’s really some sort of “privacy right,” per se. I think privacy is a responsibility, since I also believe that data and information, once they’re disclosed, shouldn’t be limited. Because of that, I think attempts to limit the dissemination of data are unethical attempts to stifle free speech. Unfortunately, this applies to everything about you. All the data and information about you that you might wish to keep private– I think it’s your responsibility to keep that data private. Companies which you contract with are focused on profit and limited in their responsibilities, and you really have a responsibility to keep that data private yourself.
That being said, this is where governments come into play, because the public is often not sophisticated in terms of contracts, and governments have to make sure that companies play fair and that the public knows of those terms. The fact is that if you look around at the climate we live in now, it’s clear that most people are willing to sacrifice a lot of their privacy and information for convenience. I’m not going to make an ethical judgement about whether that’s right or wrong, again, because I don’t think there’s a natural foundation for a privacy right.
Switching gears a little bit– do you think Yale has a responsibility to train students with respect to blockchain technology?
I think that every single university must take seriously the task of educating their students about this technology, especially from a number of perspectives. Not just from a technical perspective, but also from a social perspective as well. Blockchain has the possibility to be a truly revolutionary technology because of its power to decentralize systems of trust, and to take social institutions out of the equation that have, until now, been gatekeepers for trust. So, I absolutely think that you need to start educating people about blockchain. Frankly, people have a poor understanding of what the technology is and what it entails. They get bogged down in the technical details, and I think that frightens people away from discussing the social and political power of the technology.
If Yale should take on a greater responsibility of educating students on blockchain technology, do you think that should look different than perhaps the broader responsibility of fostering tech-literate students? For instance, the education of liberal arts students in areas of STEM?
Yes. Blockchain technology has a special role in being able to implement social objects, let’s say. As I mentioned earlier, my interest in blockchain really came out of my interest in ontology, specifically the ontology of money. Money is a very funny thing. It’s interesting from the ontological perspective, and that’s one reason why I’ve been interested in it for so long. Not only do people lack a basic understanding of how money exists, but they also ascribe to a lot of myths about how money exists. It’s not just a lack of understanding, but a sort of collective deception about its nature.
Think of social institutions such as money, political power through voting in elections, or participation in broad and new types of networks. If those social institutions can be mediated by this new technology, then the implications are much greater than merely technical: They probably impact every element of society. Right now, I’m particularly involved in the intersection of healthcare and blockchain technology. That’s a big area where people hope the impact of blockchain will reduce costs and increase access. That’s just one small example, but there are dozens of other sectors in our society where we can apply the technology and implement the values that we’ve thought about for centuries in entirely new ways.