If you happened to catch any of the news coverage of Dennis Rodman’s trip to North Korea last week, you might have spotted in the big man’s entourage a white guy with an Amish-style beard, as in clean-shaven cheeks and no moustache. That’s Joseph Terwilliger, 48, a statistical geneticist who splits his time at Columbia University and the University of Helsinki. Suffice it to say, even losing the beard Terwilliger would be no ordinary geneticist.
For starters, his passion is the tuba. He earned a bachelor’s degree in music from the Peabody Conservatory of Music and has since tooted with groups as diverse as the New York City Opera and the Tubonic Plague tuba quartet. “About 15% of my income comes from music,” Terwilliger says. Other diversions include impersonating Abe Lincoln and taking second place in a Nathan’s hot dog eating contest.
Terwilliger’s scientific career is equally intriguing. He has jetted off to western China, the former Soviet Union, Afghanistan, and Iran in search of novel traits in nomadic populations. “Most of my work has been on trying to identify natural experiments that mimic experimental conditions in a way that might help us to understand the genetics of normal human variation in health and disease,” he says. Terwilliger has also lectured in Cuba, China, Kazakhstan, Venezuela, and, he says, “many other places where relationships between their government and ours are poor.” He’s a longtime critic of the human genome project and the HapMap project, arguing that backers of those massive enterprises were misleading in suggesting that genome-wide association studies (GWAS) and other approaches would quickly pinpoint disease-risk genes meaningful for public health. “GWAS has been an abject failure in uncovering much of the etiology of complex human diseases,” he argues. “Many of my colleagues who work for large genome centers have no choice but to continue to promote the technology they have invested millions of dollars in, as they have factories set up and employees whose livelihoods hang in the balance.”
“Joe is a unique character, eccentric, brilliant, libertarian, and a lot besides,” says longtime collaborator Kenneth Weiss, a geneticist at Pennsylvania State University, University Park. “He is a voice to be heard, and thinks 10 times faster than most of the rest of us. He's basically a very good-hearted guy, but one who does enjoy notoriety!”
Which brings us to North Korea. Terwilliger has been to the Democratic People’s Republic of Korea (DPRK), as the country is formally known, eight times in the past 5 years. Twice he went as a tourist, and twice to study the North Korean dialect. He has a good professional reason for visiting the Hermit Kingdom: He and colleagues have a large, ongoing study of the Korean diaspora aiming to compare the relative contributions of genetics, culture and the environment to health-related traits. Last July, he taught human evolutionary genetics at Pyongyang University of Science and Technology (PUST), founded in North Korea’s capital in 2009 by Christian Korean-Americans. And now he’s been to North Korea with Rodman—three times and counting. ScienceInsider caught up with Terwilliger at his perch in Helsinki.
Q: Any big surprises last week?
J.T.: Every time I visit the DPRK I see things from a different perspective. Of course going there with Dennis Rodman is entirely different from going there as a teacher and shopping at local markets as we did last summer. I have been all over the country, and seen Korea from many different perspectives, and the one thing that is invariant in all those different vantage points is how sweet and kind the citizens of the DPRK are. The Korean word 소박함 describes perfectly the innocence, warmth, sincerity, and kindness of the North Korean people.
One anecdote from last week. We were at the new Masik Pass ski resort near the East Coast of the DPRK, which was just opened in the last month. We were the first foreigners to visit it after it opened. I was sliding down the bunny slope in a tire tube and got turned around and lost control. A Korean man then blocked my tube and was knocked down hard enough to the ground to have been hospitalized for a possible concussion from the collision. I then kept moving in the tube and five other Korean men also were knocked to the ground in their effort to stop my tube from going off a 100 foot cliff that was located at the bottom of the bunny slope.
I had the chance the next day to meet these men and thank them, and every one of them was gracious, sweet, and wonderful to me, even though one of them even had to go to the hospital because of my accident. This genuine sweetness and kindness is typical of people in the DPRK. People are the same everywhere, and interaction with them can only be a good thing.
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Q: How did you become part of the Rodman entourage?
J.T.: In April of 2013, I saw an online auction for charity where people could bid on the chance to play H-O-R-S-E with Dennis Rodman. So I bid and won, solely because I wanted to tell him that I supported what he was doing and would be happy to assist him if he needed any help on the ground, as I was going to be in the DPRK teaching and living there in July.
A few weeks after the H-O-R-S-E game, Dennis's agent contacted me and asked if I could help find a way to get Dennis back to the DPRK without involving Vice magazine and their media crews who made his previous visit less than ideal. We eventually chose a friend of mine, Michael Spavor, a Canadian living in Yanji, China, to organize the visas and logistics with the DPRK Olympic Committee and Sports Ministry. Together, he and I and two student volunteers organized the return trip in September and helped with translation and cultural advising during his trip.
The September trip was one of the most amazing things I have ever been involved with in my life. And I almost could not even go, as I suffered a retinal detachment the last night I was teaching in Pyongyang in July and had to have emergency surgery on my return to NYC to repair the retina. They had to perform a complete vitrectomy and attach a scleral buckle to the eye, and I had to remain face down with a gas bubble in my eye until the third week of August. The trip to Korea was on September 1st, so I was very close to missing the entire thing. While my vision was not good, I was cleared to travel and had the experience of a lifetime.
The rest is history, as we then worked on the logistics for setting up the basketball game held last week, and the training session in late December.
Q: Has the experience changed your life?
J.T.: No, I have kept a very low profile. Sure, it has come out that I was there, and my photo is all over the place, but most people just ask, "Who is the crazy looking bearded guy with Dennis?" so it has had very little direct effect on my life. I was just there to assist him, to help with translation. Basically I was there as Dennis's friend who happens to speak Korean.
While it seems very normal to me at this point, if someone had told me in January 2013 that a year from then I would be hanging out in Pyongyang with Marshal Kim Jong Un, Dennis Rodman, Cliff Robinson, Charles D. Smith, Kenny Anderson, Doug Christie, and Sleepy Floyd, I would have laughed in your face. But they were all wonderful to me, and especially to the basketball players who joined us for this game. They were all there for positive reasons, to interact with local people, to teach basketball, to make people smile by doing what they do best, and by generating money to support deaf children in Korea. Their intentions were entirely selfless and noble, and they did a positive thing, despite the enormity of the criticism they have received on returning home. Any form of interaction is a good thing when done between people of nations whose governments have hostile relationships.
Q: Last July, you spent 3 weeks teaching at PUST. What was that like?
J.T.: I viewed this as a great opportunity to experience the DPRK as a resident, and also to help build a positive and trusting relationship with people in the DPRK, a necessary prerequisite for some future scientific exchanges. I viewed my role there as one of showing the positive side of the American people to a population who has heard mostly negative stereotypes about us.
I engaged the students, taught them scientific critical thinking, and showed an understanding of their society and culture which most foreigners do not even try to get into. I spoke Korean with their grammatical styles and their accent, and I showed familiarity with their culture. Students all wrote me very sweet notes attached to their final exams about how they really appreciated my efforts to understand their country and needed to think twice about their opinions of the American people as a result of our interactions.
They said the very same thing about their experiences viewing Dennis Rodman's visit to their country in February of 2013. Many students talked about how much they loved watching that basketball game on television, and how many had even read Dennis's autobiography and admired him for being so frank about the difficulties he had in his life. And when they saw him saying nice things about their country and their leader it really affected their views of American people, seeing one in this light for the first time. To this end, an enormous amount of goodwill had been engendered by Dennis's efforts at sports diplomacy, as well as the impact I think I was able to have on my small class of students by doing the same things with science as the vehicle of choice.
Q: Rodman’s basketball diplomacy is one of the few things the United States has going with North Korea right now. Do you see an opportunity to engage the North Koreans through science diplomacy?
J.T.: I have tried to do this by teaching at PUST last summer, and may go back in the future as well to pursue that further. I would love to have the chance to help them with epidemiological or genetic studies in the DPRK, and would love to work with their students to help them going forward. Every time I have been there, including last week, I was asked when I would come to teach again, and they seemed very positive about the potential for further interactions on a scientific level going forward. I have no specific agenda at this time, but hopefully something will materialize in the near future! Science, music, sports, culture, academics all have the potential to build bridges between people with no risk to government and no political overtones, and I hope that I will be able to help build such bridges between our countries in the future, using the trust and connections I have built with them over the past several years.
I hope to have more opportunities to interact with the North Koreans on a scientific level—in fact that was a large part of my motivation to get involved with Rodman's efforts as a way to build contacts, connections, and trust, so something positive could happen down the road.