Of Meetings and Momos: Co-creating a Human Genomics Study in Nepal

Erin Burke, PhD
Variant Bio
Published in
11 min readApr 8, 2020
Boudhanath Stupa. Photo credit: Tom Martienssen

I’m writing this blog post from the comfort of my home office in Brooklyn, New York. Outside my apartment walls, the world has become a very different place in one month. The coronavirus has New York City in its grim grip, and I spend most days refreshing the Johns Hopkins coronavirus online tracker. On the other side of the world, Nepal has just extended their nationwide “lockdown” until April 15. It’s almost hard to believe that a few weeks ago, Kaja Wasik (Variant’s CSO), Tom Martienssen (a documentary filmmaker), and I (Head of Partnerships) spent a total of two days in airports and on planes going to and from Nepal, then spent hours in taxis, restaurants, and crowded street shops. We returned to a different world when we touched down in New York at the beginning of March. Just the thought of that many people in confined spaces seems inconceivable now–a testament to how much I have adapted to the “new normal” of social distancing required to avoid spreading the virus.

Kaja and me taking precautions against Covid-19 on our flight to Kathmandu. Photo (selfie) credit: Kaja Wasik

Before the whole world started closing its borders against Covid-19 and Variant instituted a ban on all company travel and began working from home, Kaja, Tom, and I boarded a plane and set out for Kathmandu, Nepal. We went to work on our project, “The Health and Genetics of Nepalese Communities Living at High-Altitude in the Khumbu Region.” We debated for a while whether we should go at all, but at the time there was still only one case of Covid-19 in both Nepal and the U.S., and no one was recommending a halt in travel as they are now, so we went ahead with our trip. Once we landed, we learned that Nepal had cancelled its visa-on-arrival program; a smart move to limit the number of incoming tourists.

Our connection to Nepal began with Tom, who has been to the country over eight times and is acquainted with many Nepalese Sherpas. He was filming on Mount Everest when the 2015 Nepalese earthquake triggered avalanches that trapped over 100 climbers in Camp 1 for several days. Three of the Sherpa climbers on Tom’s team were killed, along with several others. He broke the news story and made a documentary about the families of these Sherpas. As a result of that documentary, the families received financial support from the Nepalese government. Since 2015, Nepal has largely been rebuilt; the gaps in Kathmandu’s skyline are now covered with modern buildings funded by the steady stream of tourists from around the globe, equally as enamored of Nepal’s beauty as we are. The human gaps in Nepalese families are harder seen, and harder covered.

Beyond the borders of Kathmandu lies the Khumbu Valley, a region ringed by the Himalayas. The Khumbu Valley is home to the Sherpa community, and to the Nepalese doctors with whom we are collaborating. We started this collaboration when Kaja and Stephane (Variant’s CTO) visited Khumbu in October of 2019. They met with local Sherpa community leaders and doctors to understand if the community would be open to partnering with us on a study of Sherpa health and genetics. For more background on the project, or just to view some of the breathtaking scenery in the foothills of Mount Everest, you can check out the video from Variant’s first trip to Nepal here.

From left to right: Me, Kaja, and Tom at Boudhanath Stupa. Photo credit: Tom Martienssen

Our first order of business in Kathmandu was to finally meet our collaborator, Dr. Sonam Zangbu Sherpa, in person. Despite many Skype calls and WhatsApp messages over the months, we had never met face-to-face because Sonam lives between Washington State and Kathmandu, while Variant is based in New York City. Sonam grew up in the Khumbu Valley, left home to attend medical school in China, then returned to Nepal to practice medicine in Kathmandu, eventually finding his way back to the Khumbu Valley to work in the best hospital in the area (Kunde Hospital). Over freshly squeezed watermelon juice, we discussed our project proposal, namely, what kind of benefits we could bring to Sherpa living in the Khumbu Valley. One of the pillars of Variant’s mission is to share tangible benefits with the populations we work with. You can read more about this on our website. Sonam is very invested in the wellbeing of his community, and was a coordinator for Red Crescent and Red Cross during the 2015 Earthquake in Nepal. Collaborating with him has allowed us to directly address some of the health needs of the Sherpa community. One of his suggestions: giving out basic medical supplies like bandages, alcohol swabs, and glasses–a reminder that sometimes the most straightforward solutions mean meeting the most basic needs.

Meeting our collaborator, Dr. Sonam Z. Sherpa, in Kathmandu. Photo credit: Tom Martienssen

Sonam also stays in touch with the local Sherpa leadership to discuss the project, consent process, and community benefits. Thanks to Sonam’s involvement, we have a letter of support from the chairman of Ward 4, Laxman Adhikari, who represents the people of the Khumbu region. The community leadership’s support is always crucial for informing research participants about the study, ensuring they understand the project goals, and having someone they trust to direct questions. We also engaged a third-party consultant who could review our materials for cultural appropriateness and sensitivity: Dr. Pasang Sherpa, a Sherpa cultural anthropologist working in the United States, provided very helpful suggestions.

Laxman Adhikari (L), a Khumbu community leader, discussing our project with our Sherpa collaborator, Dr. Sonam Z. Sherpa (R). Photo credit: Sonam Z. Sherpa

While in Nepal, we also met with our other collaborator, Dr. Rishi Aryal, and our logistics coordinator, Ram Rijal, the CEO of Himalayan Research Expeditions. Rishi is a surgeon at the biggest governmental hospital in the country, Bir Hospital. He accompanied Kaja and Stephane into the Khumbu Valley last October and gathered health statistics from every hospital and clinic along the trek. Himalayan Research Expeditions (HRE) specializes in logistics in the Himalayas. For example, they can easily arrange a yak or a helicopter to transport supplies to areas where there is no car access. HRE has experience managing projects for entities like the BBC and the British Antarctic Survey, so we were well taken care of with them. This meeting was accompanied by the first of what would be many plates of momos. Momos are the Nepalese version of dumplings–a delicate dough filled with vegetables, chicken, yak, or buffalo. It’s safe to say we ate our weight in momos this trip!

Sonam, Ram, Rishi, and Variant discussing logistics. Photo credit: Tom Martienssen

Together with Ram and Rishi, we also discussed our application to the Nepal Health Research Council (NHRC) for approval of our study. The NHRC is a department within the Ministry of Health responsible for reviewing research proposals involving human subjects. Rishi will be assisting us with the intricate application process and facilitating communication with the NHRC.

Next, we visited the NHRC’s offices, where we were able to ask questions regarding our proposal and the overall application process. It was a constructive meeting and we left feeling confident that we had prepared our application in accordance with the NHRC’s guidelines.

Visiting the Nepal Health Research Council. Photo credit: Tom Martienssen

To ensure that what we are proposing is in accordance with Nepalese law, we engaged Prakash Mani Sharma. Prakash is a Nepalese public interest environmental lawyer and Director of Friends of the Earth, Nepal who, in 2004, filed for protection of the Everest National Park. He did this through a petition to the UNESCO World Heritage Committee to list Everest as a World Heritage Site in Danger, a legal status that triggers a higher level of protection under the World Heritage Convention. Unfortunately, his petition was eventually blocked. But this effort established Prakash as a respected advocate of the Sherpa community. It was a real privilege to chat with him and get his legal advice on our project. He will be working with us throughout the project.

Prakash (L) attending an environmental conference with Mr. Barack Obama. Photo credit: Kaja Wasik.

With all the instructions gathered from meeting with our collaborators, lawyer, and NHRC staff, Kaja and I spent the day collecting and organizing our application materials. The next day, Rishi and I bent over the computer for hours, meticulously editing our application until we were confident enough to finally hit “submit”!

Putting the finishing touches on our NHRC application with Dr. Aryal and Ram Rijal. Photo credit: Kaja Wasik

One of the perks of working for a company that actually engages with the local community was meeting Tenzing Tashi Sherpa and Lhakpa Doma Sherpani (known as Kanchi). Tashi and Kanchi are a husband and wife team who own a renowned teahouse, the Hidden Valley Lodge and Restaurant in Khumjung. Teahouses in Nepal are sort of like small, independent B&Bs. When trekking through the Khumbu Valley, you can stop at one for the night and get a warm bed and hot meal. Tom and Kaja first met Tashi when they stayed at the Hidden Valley Lodge while trekking through Khumjung this past October, and raved about the lodge’s apple fritters. Before he retired to run his lodge, Tashi was one of the first grassroots Sherpa community leaders and focused on protecting the Khumbu environment. He is also an accomplished mountaineer, having scaled some of the hardest routes in the Himalayas since 1979. But the purpose of our lunch (of, you guessed it, momos) was to discuss a project more anthropological in nature: Tashi has written a book about Sherpa culture and Variant is sponsoring its translation and print run in English. This book is the only comprehensive tome about Sherpa history and culture authored by a Sherpa. Once it is translated, it will be printed and sold to visitors to the Khumbu Valley who wish to learn more about the Sherpa people of Nepal. Helping spread knowledge about Sherpa history by one of the region’s most prominent Sherpas is the least we can do for our incredible research participants.

From left: Tom, Kanchi, Tashi, Erin, Kaja. Photo credit: our waiter

In addition to all of our hard work, we also attended the wedding of Sonam Sherpa and Kalpana Sherpa. It was a real privilege and a wonderful experience to meet our collaborator’s family and participate in this very important day. You can read about that amazing occasion on our photo blog here.

Lest you think we were diligently working the entire trip, we did manage to squeeze in quite a few cultural activities. The first tourist stop was a visit to Swayambhunath Temple, perhaps better known to Westerners as “the monkey temple.” Located just outside Kathmandu’s city limits, the temple rests upon a hill that looms over the Kathmandu Valley. You reach the temple by ascending a long set of stairs festooned in prayer flags, all the while dodging the playful monkeys and stray dogs that call the temple home. At the top of the staircase is a stupa, or Buddhist monument. Stupas are traditionally hemispherical in shape and contain Buddhist relics. Devotees and visitors make a circle around the stupa, always in a clockwise direction. Should you manage to take your eyes off of the baby monkeys and turn back towards the direction you came, there is a beautiful view of the Kathmandu Valley spread out before you.

The monkey inhabitants of Swayambhunath Temple. Photo credits: Tom Martienssen

One evening, we also stumbled upon an Aarati Puja ceremony at the Pashupatinath Temple. An Aarati Pooja is a Hindu ceremony involving light, usually fire. This particular Aarati was being performed by two priests, situated high on the steps of the temple on the upper bank of the Bagmati river. They swung lamps and sang hymns, while on the opposite side of the river, funerary pyres burned, attended by family members saying goodbye to their loved ones. Both sides of the river were crowded with devotees, tourists, monkeys, and stray dogs. At the conclusion of the Aarati, the remaining ashes of the pyre were swept into the river, and a new pyre was prepared for a different deceased person just downriver from the first. It was unlike any religious ceremony or funeral I have ever attended.

Aarati Pooja ceremony at the Pashupatinath Temple. Photo credit: Tom Martienssen

On our last day, we toured another beautiful stupa, Boudhanath Stupa. Part of the tour included a visit to the Rincheling Thanka Gallery and Art School where we learned about the painstaking process of creating the beautiful Tibetan artwork known as thanka. Thanka are paintings on silk or canvas depicting different Buddhist gods, scenes, or sometimes a mandala. One of the most well-known types of these is the bhāvacakra or “wheel of life,” an intricate diagram representing different realms in Buddhist teachings. If you ever visit a Tibetan Buddhist temple, you will see a wheel of life painting hung to the right of the door.

Thanka artwork. Photo credit: Kaja Wasik
The Wheel of Life thanka artwork. Photo credit: Tom Martienssen

An important part of every trip to a new place involves supporting local shopkeepers. Since the number of tourists was noticeably down in comparison to previous years as a result of Covid-19, Kaja and I decided it was our moral obligation to buy as many personal souvenirs as could possibly fit into our suitcases. Thankfully, we had freed up a significant amount of space in our luggage after distributing gifts for our collaborators and a wedding gift for Sonam. Armed with the belief that supporting local business negated our spending guilt, we browsed through rugs, scarves, Buddha statues, drawings, flags, and pillowcases. We got quite a few of them, filling our small New York apartments with the beautiful handicrafts of Nepal.

Kaja and Erin trying on scarves in one of the tourist shops in Thamel, the tourist district of Kathmandu. Photo credits: Tom Martienssen

Finally, we ended our trip with a last minute, frantic walk through the byzantine streets of Kathmandu’s tourist district, Thamel, in search of Kaja’s second favorite Nepalese delicacy, Dal Bhat. Don’t worry, we also had two final plates of momos. :) With our bellies full, we packed our bags into the back of a cab and headed for the airport. Our plans to return to Nepal are now on hold until the coronavirus situation is under control, but we are still holding out hope that we will be able to return some time this year. (Fingers crossed that Kaja can wait that long without momos!) In the meantime, our thoughts are with our friends and collaborators on the other side of the world as we all collectively hunker down at home until this crisis passes.

Until next time, Nepal.

Our last meal in Kathmandu consisted of Thali with Dal Bhat. Photo credit: Tom Martienssen
Momos, a Nepalese delicacy. Image credit: Amalia Gonsalves / CC BY-SA (https://creativecommons.org/licenses/by-sa/4.0)

--

--