Finding a New Language: Translating Bioethics to the Private Sector

Tell us a little bit about your background.

I did my undergrad at Stanford, getting my BS in Science, Technology, and Society (STS) with a concentration in Life Sciences and Biotechnology. That wasn’t my initial plan, though: I started my Stanford career planning to be a pre-med studying bioengineering. (I’d been really interested in genetics since watching Jurassic Park as a kid, and I had a sense that genetics would have a big impact on medicine.) But then, in my first bioengineering lab course, I was handed a culture of HeLa cells — immortal human cells derived from Henrietta Lacks without her consent. From that situation, I realized that I also wanted to study how science has had an impact on people and society — for good and for ill. That led me to STS and, in turn, to bioethics.

What brought you to the Duke MA in Bioethics and Science Policy Program and how has it contributed to your career and professional goals?

I saw the Duke MA Program as a way to study bioethics in a more practical way. My STS major started exposing me to bioethics in a philosophical sense, and I loved what I saw. But, I wasn’t sure I wanted to stay with bioethics in strictly academic, theoretical way. What interested me most about bioethics was how the philosophy gets translated into the everyday experiences of people as they interact with science — and particularly new advances in genetics. Thanks to my undergrad advisor, the bioethicist Hank Greely, I found the Duke MA Program and realized that it was just what I was looking for.

Once I got to Duke, the Program’s curriculum and faculty advisors really helped me to narrow my professional focus and plans. By getting my concentration in Genomics, I was able to set myself up well for a career in the personal genomics industry.

What was the topic of your capstone project and how has this experience and your advisor influenced you?

I did my capstone at Helix, a personal genomics startup based in Silicon Valley. Helix wasn’t even a year old when I started my capstone, but it had an amazing goal — to empower every person to improve their lives through their DNA. Helix is setting up a platform (i.e. an online marketplace) for genetics: Helix sequences consumers’ whole exomes (plus a few other regions we know are important), and Helix’s partner organizations build products that let consumers use their genetic data in meaningful ways. My capstone project allowed me to explore a variety of bioethical policy questions that Helix was facing as it geared up to launch the first product on its platform, the latest version of National Geographic’s Genographic Project.

My capstone advisor, Dr. Misha Angrist, primed me to approach the experience critically. In a characteristically Misha way, he advised me to ask myself if the Emperor was wearing clothes — if what was really happening at Helix matched its exciting public face. I think that was great advice for me, someone who was returning to the Valley and is enthusiastic about the promise of personal genomics. The industry is still young, the science is often early, and the bioethical questions are big; cautious optimism is responsible optimism. Thankfully, working at Helix gave me a lot to be optimistic about. My capstone was all about helping a company that was actively trying to do right by its then-future users, and that made it easy to go back once I graduated.

You work now at Helix. How did you get the job and how has the MA Program prepared you for this position?

The job I have now at Helix really grew out of my capstone project. Through the course of the summer, I synced well with the team, and I realized that I wanted to stay here and continue to work on the questions that Helix was facing. So I talked with Helix’s Director of Policy & Genomic Services, Elissa Levin, about joining the team, and she helped me start the conversion process. A week before flying back to Duke for my capstone defense, I officially accepted the role of Policy Analyst!

The Program definitely prepared me well for the capstone and the job it turned into. The courses we had really helped me to think about how policy can help bioethics have a real-world impact. And with the help of great advisors like Misha and my program advisor, Dr. Jory Weintraub, I felt prepared to take my first steps out of academia and into industry.

Is your position an entry level position? Where do you see yourself in 5 years?

My role is definitely entry-level, but in true startup fashion, that still means that I have a lot of responsibilities and a lot of projects that I get to drive.

I can easily see myself at Helix 5 years from now. We’ll have grown tremendously in that time, both in terms of our team’s size and our platform’s depth. Because of that, I think that many of the bioethical questions we face will be different — but still just as exciting for me to answer. 5 years seems like a long time for the Valley, and there will may be ways that Helix and the industry grow that I can’t even predict today. And I find that very exciting.

What is the main challenge that you encountered on the job?

The biggest challenge I encountered in my role at Helix has been one of translation: How do I distill my bioethical analysis of an issue in a way that is approachable and helpful? Part of that was finding a new language to talk about bioethics, since philosophical lingo doesn’t often mean much outside of academia. Another part of it was learning to be more concise and straightforward in my communication — especially when dealing with nuanced issues.

What would be the best advice that you could give based on your own experience to the students seeking careers in bioethics & science policy?

I have two main pieces of advice for students of bioethics and science policy. First, never stop learning. Bioethics, by its nature, will never solve every dilemma; policy, by its nature, will never cover every situation. As we keep grappling with bioethics and policy, we must constantly adapt and grow. To do so, we have to keep learning — from ourselves, our colleagues, and the people affected by what we do.

But the biggest piece of advice I could give to students of bioethics and science policy would be to use their hearts as much as their heads. And I mean “heart” in the sense of both passion and compassion. Find your passion, that thing that calls out to you and brought you here in the first place, and let it be the mission that drives you forward. Mine was expanding access to genetics in a responsible way, and that gives me something to work towards even today. As you do so, make sure that you remember to involve compassion into your relationship with bioethics. After all, bioethics is fundamentally about people. Bioethics without compassion is cold. At the end of the day, we are bioethicists because we care about people, and that should always be part of the discussion.

About Johnathan:

Johnathan is a graduate of Duke Master of Arts Bioethics & Science Policy program within the Duke Initiative for Science & Society. As an undergrad he studied Science, Technology, and Society at Stanford University.