As a part of my interview series with leaders in healthcare, I had the pleasure to interview David R. Koepsell, J.D./Ph.D. David is an entrepreneur, author, philosopher, attorney (retired), and educator whose recent research focuses on the nexus of science, technology, ethics, and public policy. He is the founder and CEO of EncrypGen. He has been a tenured Associate Professor of Philosophy at the Delft University of Technology, Faculty of Technology, Policy, and Management in the Netherlands, Visiting Professor at UNAM, Instituto de Filosoficas and the Unidad Posgrado, Mexico, Director of Research and Strategic Initiatives at COMISION NACIONAL DE BIOETICA in Mexico, and Asesor de Rector at UAM Xochimilco.

Thank you so much for doing this with us! Can you tell us a story about what brought you to this specific career path?

For quite a while, since after I decided to leave the practice of law, I have been an academic, mostly teaching and writing about ethics and technology. In the autumn of 2016 I was invited to give a talk at my alma mater and I decided to talk about blockchain and how it might be useful in genomics. I never imagined it would launch me in the direction of actually starting a business, but here I am. EncrypGen was born just a few months after.

Can you share the most interesting story that happened to you since you began leading your company?

I think the most interesting part has been connecting with our growing online community, and learning about them, even making some friends along the way. A few of our supporters have taken the time to come to events to meet and talk with us, and the highlight was when we went to the Festival of Genomics in London in January 2018, where many of us met each other (we are a distributed company, geographically) for the first time in the flesh, but also some of our best supporters. That was a peak experience in many ways for me.

Can you tell our readers a bit about why you are an authority in the healthcare field?

I have been teaching and writing on issues of bioethics for more than a decade, as well as sitting on a few ethics committees at the universities at which I have worked. My knowledge and interests in healthcare stem from and relate mostly to issues relating to bioethics, which is no longer just theory for me, but now my every day practice in building a product that is intended to conform to and provide a mechanism for ensuring ethics in research using genomic data.

What makes your company stand out? Can you share a story?

We are literally a “mom & pop” operation. Dr. Gonzalez and I are not only married but long time collaborators, having written and lectured together for the past decade and a half. We started the company together and have been raising it as lovingly as we do our own two children. Motivate by our own personal concerns and interests in ensuring more genetic data is shared for science, as Vanessa is the scientist among us, and that it is done so ethically, as David taught bioethics for a decade as well. Because of our personal connections to the specific goals we have built into our product, and due to the fact we have nuilt what we built on a shoestring, comparatively speaking, and beaten every other competitor to market, we feel we are unique.

Can you share with our readers about the innovations that you are bringing to and/or see in the healthcare industry? How do you envision that this might disrupt the status quo? Which “pain point” is this trying to address?

It is usually pretty hard for scientists to get access to genetic data. If they want to get data from a specific population, they usually have to recruit subjects into a study, which is a lengthy and expensive process, and labor intensive. They must get approval for the study because it involves a tissue sample, and consent from the participants, then they need to sequence the samples to get the genetic data, which is also expensive, and then they can correlate whatever data they derive with whatever information they are seeking from the subjects they recruited. On the other hand, millions of people are getting genetic tests done, and have access to that data. Those people are having their data used in studies by researchers who are buying data from the companies doing that testing, sometimes without fully realizing it, and definitely without being paid, even while the consumer testing companies selling that data make hundreds of millions. Our product, the Gene-Chain, is a free market that allows people who have done genetic tests to sell that data directly to researchers, making the process simpler, more cost-effective, and profitable for both sides of the transaction.

Are you working on any exciting new projects now? How do you think that will help people?

We are working on extending the nature our data gathering to make it more flexible. While genetic testing companies all use standard questionnaires to gather health and behavioral data about their users to make the genetic data more valuable to sell to researchers, we have a new custom survey tool that allows researchers to follow up even while keeping users de-identified, so they can design their own custom surveys for their studies. This comes out of a specific request and we know there is inter4est for this sort of flexibility, which we are excited to provide.

What are your “5 Things I Wish Someone Told Me Before I Started” and why. (Please share a story or example for each.)

I wish I’d known how difficult it is to find talent. My first attempt was through my Facebook friends network, which was more or less a disaster as I hired someone who, it turns out, was less than competent, to put it mildly, which cost us precious time. I wish someone had mentioned how difficult it is to raise money for a product that has not yet been built and has no user base. We ended up self-financing ourselves for almost a year, being very frugal, before finding more money by pre-selling out platform tokens to ramp up development. I wish I had known that running a decentralized team was so alien to VCs. We have been decentralized from the beginning, consistent in many ways with the philosophy of blockchain, but every VC we talk to finds this uncomfortable and strange. Given our success, I hope they start reevaluating their preconceptions. I wish I had known that crypto and blockchains were considered so risky, and that they would garner prejudice. Part of this has to do with the greed and disillusionment that has followed since we started out due to the many scams out there, but it has been an uphill climb for us to distinguish ourselves from those, primarily through carrying on and creating our product and then releasing it. I wish someone had told me that in the wake of our success, dozens of copycats would spring up without bothering to reference us, all while making claims to be the first such effort. This is especially frustrating as they fundraise prior to release stilol, even while we have had products in the market for well over 12 months.

Let’s jump to the main focus of our interview. According to this study cited by Newsweek, the US healthcare system is ranked as the worst among high income nations. This seems shocking. Can you share with us 3–5 reasons why you think the US is ranked so poorly?

I have lived in two foreign countries, The Netherlands and Mexico, each for more than 5 years. In each of those countries there are private healthcare systems. Neither has “universal healthcare” per se. Rather, their healthcare is affordable. One reason that seems common to both is that the cost of entering the field of medicine as a practitioner is much lower than the US, and so perfectly capable doctors can charge less for their services. In both countries I have paid cash for routine care. In both countries, my visiting parents needed more than routine care, unexpectedly, and in each case again I was able to meet the expense with cash. By making routine and even emergency care more affordable, by fewer barriers to entry for practitioners, routine care is not discouraged and people are able to better afford health maintenance. As well, overbilling and the availability of insurance and monopolization are preventing free market principles from keeping costs down for those who lack insurance. In a truly free market for health care, with lower barriers to entry and less manipulation of prices due to governmentally-enabled monopolies, both healthcare costs and outcomes would improve. None of this is speculative, systems like Mexico and The Netherlands help demonstrate the truth of this claim.

You are a “healthcare insider”. If you had the power to make a change, can you share 5 changes that need to be made to improve the overall US healthcare system? Please share a story or example for each.

Lower the barriers to entry and costs of becoming medical providers. With more competition in every case prices fall, and more people who might otherwise be unable to join medical professions should have better access to doing so. This is true for every profession, including law, for instance. Make it harder to sue medical professionals and recover exorbitant sums. This is again a disincentive to entering the medical profession, it has been exacerbated by insurance coverage, and the premiums being necessary now for medical insurance policies are also outsized, causing rates for care to increase. This is a vicious cycle. With affordable health maintenance payable out-of-pocket, basic care will improve outcomes and daily health. One part of this is providing incentives to “ownership” of medical data, for instance. The trends toward wearables with health data, and for cheap genetic testing for clinical use, provides an opportunity for people to take charge of their health through monitoring and even monetization of their health data. Our own company has sought to create such an environment in the case of genetic data, but other types of medical data can be similarly owned and used. Education is a big part of the problem. Besides barriers to entry for healthcare providers, and expensive hurdles in the form of, for instance, medical malpractice insurance, individuals need much better information about their own health and how to preserve it. The American diet is a large factor in increasing health costs, and much of this could be improved through better basic education starting in pre-school and lasting throughout a child’s entire schooling regarding health and nutrition. Concentrate less on overhyped new tech until it has been proven to improve outcomes and lower costs. Not every fancy new machines needs to be used or advertised such that clients start requiring it when its use is in doubt. A lot of that tech ends up passing along increased costs through medical bills, again often picked up by insurance companies. Keep with the basics unless extraordinary cases present themselves and require more. An example from genetics and medicine is whole genome sequencing. When the price of that sequencing drops, then use it for standard care. Meanwhile, there are cheaper options, like SNP arrays.

Thank you! It’s great to suggest changes, but what specific steps would need to be taken to implement your ideas? What can individuals, corporations, communities and leaders do to help?

Most of what I am suggesting above can be implemented by physicians, patients, and teachers, but there will need to be some regulatory changes. Among these are: reducing regulatory barriers to entry to practice medicine, and some sort of regulatory limits on malpractice claims, awards, and insurance.

What are your favorite books, podcasts, or resources that inspire you to be a better healthcare leader? Can you explain why you like them?

I listen to Genetics Unzipped, a fantastic podcast by Drr. Kat Arney. She is personable, easy to listen to, brilliant and helps explain the subject for non-experts.

How can our readers follow you on social media?

@drkoepsell and @encrypgen on twitter

Thank you so much for these insights! This was so inspiring!