When the doctor told a young Bhutanese couple of Nepali descent that their 18-month-old child had a rare genetic disorder and would die before her third birthday, the parents’ grief was complicated by the idea that their bodies, and perhaps even their karmic inheritance, had produced this unimaginably sad prospect. They understood what “genes” meant: Both were college educated and bilingual. But they struggled against this singular way of understanding the double helix of inheritance and fate.
Dressed in a sari and speaking Nepali, the grandmother of this sick child told me she had given birth to five sons, all at home in her native Bhutan. For a devout Hindu woman, this is like winning the lottery. But this was before the Bhutanese government expelled her family, along with 100,000 others, sending them to refugee camps in southeastern Nepal. Now resettled in New Hampshire, the family has navigated three countries and multiple languages, an ethnic cleansing campaign and a dirty civil war, and now the disorientation of coming to America.
“We have suffered, but we have always been healthy. There has never been this ‘genetic’ problem before in our family.”
“We have suffered, but we have always been healthy,” she says, while showing me pictures of the farmland she left in Bhutan, her neighborhood of corrugated tin shacks in the camps, and her small apartment in Concord. “There has never been this ‘genetic’ problem before in our family.” Still, a hospital resident felt the need to call them “clueless” when, after reviewing the nature of the genetic disorder in question, the family did not want to publicly acknowledge that the child would soon die. Far from clueless, they knew speaking of the possibility of death could, in effect, hasten a negative outcome. They owed it to the child to have faith.
Looking across the valley toward Mt. Dhaulagiri, the world’s sixth-tallest mountain, I engage a 52-year-old woman in a discussion about genes, reproduction, and living at high altitude. She is one of the more than 1,000 culturally Tibetan women my colleague Cynthia Beall, a biological anthropologist and member of the National Academy of Sciences, and I are interviewing. We are taking reproductive histories, recording biometric markers, and collecting saliva samples for DNA analysis.
Tibetans have lived at altitudes above 10,000 feet for at least as many years; consequently, they have developed distinct biological traits including unexpectedly low levels of hemoglobin, the molecule that carries oxygen. The genes that account for such hemoglobin levels were recently identified and occur at uniquely high frequency among Tibetans. One likely mechanism for this high frequency is higher fertility and child survival for those people with the low-hemoglobin forms of these specific genes. Of course, we also recognize that whether a child lives or dies in a remote mountain village of northern Nepal has just as much to do with environment, culture, and socioeconomic conditions. Accounting for such factors is, in great part, my role on this project.
This U.S.-Nepalese collaboration has health implications for people living at all altitudes around the world because these genes are necessary for intrauterine development. They also play a central role in the biology of diseases as diverse as osteo- and rheumatoid arthritis, heart failure, and cancer.
All fine and well. But when I strike up a conversation with this village woman, translating science across culture in ways that will be meaningful remains challenging. I explain in her local dialect that, culturally, Tibetan people have special abilities in their bodies to live and be strong in the high country, that this “specialness” can be seen in their gyü, a gloss for “genes.” Yet, like most Tibetan words, gyü is multivalent, at once signaling kinship—the blood and bone one receives from mother and father—and also pointing toward spiritual lineage and the continuum of life, and of Buddhist teachings on the nature of cyclic existence.
(Photo: Sienna Craig)
I go on to explain that this “specialness” may also be related to how many children women have and how many survive. I reassure this woman that I do not want to take her blood, but if we can carry some of her spit back to America, we can learn more about these issues and hopefully benefit future generations.
The woman listens intently, laughs as she imagines her spit traveling to America “like my children” even as “this old mother stays in the village, doing all the work,” and agrees to participate. Even so, when she speaks of causes and conditions of child death, she speaks not of genes but of the work of nüpa, at once a term for nefarious spirits and generalized harm, the dynamics of karma and the harshness of mountain life.
This U.S.-Nepalese collaboration has health implications for people living at all altitudes around the world because these genes are necessary for intrauterine development.
Some months later, I find myself in a genetic counselor’s office in the oncology ward of the same hospital where the Bhutanese child had died. I am being walked through a rare hereditary disorder called Muir-Torre syndrome that predisposes people to different forms of cancer. A routine visit by my father to the dermatologist turned up a sebaceous carcinoma that, upon further lab work, pointed toward the possibility of Muir-Torre. For the better part of the next decade, he was advised to undergo seriously intensive preventative screening measures. As a healthy person under 40, I was now subject to colonoscopies every two years and warned I might want to get a preventative hysterectomy.
As I sat listening to scientific explanations, I imagined a local lama, by turns priest and physician, making astrological calculations and recording a kyekar, a natal horoscope, for a young child. Although a skeptic or a strict materialist would dismiss such actions as superstitious mumbo-jumbo and mark this practice as distinct from biomedical science, there is an empirical precision to such acts. Indeed, such forms of predictive Buddhist counseling and their attendant diagnostic technologies are this culture’s equivalents of the diagrams of mismatched repair genes alongside my family pedigree, which the genetic counselor used to augur my probabilities of risk from Muir-Torre.
As much as genetic maps and the promises of genomic, personalized medicine represent innovative science, these are also distinctly cultural ways of making sense of nature/nurture dynamics and specific ways of conceptualizing risk. Consider the popularity of services such as “23 and Me” or other for-profit diviners of ancestry. But while these personal genetics companies operate on a logic of consumer demand and folk understandings that often conflate genetic make-up with gene expression, those who interpret webs of family, environment, and inheritance through astrological and karmic lenses have a different stake in the results. Rather than aiming for profit or the latest in “evidence-based medicine,” they use different forms of evidence to address and explain, to situate, advise, and support people they know intimately through times of uncertainty.
In the post-procedure haze of my last colonoscopy, I imagined those genetic tests and these screening mechanisms as elaborate protection rituals—invasive and expensive ones. The images of my clean colon provided evidence that the high priests of medicine have done their jobs well, and I had been spared. A few months later, my father learned he and his brother were not carriers of Muir-Torre, rendering further screenings mute. And yet the experience has marked us, triggering specific forms of embodied doubt and the oddly sweet relief of being told we’re “normal.”
