"This fascinating ethnography of global patients, the internet, and Chinese neurosurgeons experimenting with fetal cell interventions marries the existential quest for hope with China's search for wealth and power in the twenty-first century. Biomedical Odysseys is a useful provocation for China studies, medical anthropology, science studies, and medical ethics."--Arthur Kleinman, coauthor of A Passion for Society: How We Think about Human Suffering

"Exploring an important and timely topic, this book is a welcome addition to burgeoning anthropological studies of the deep entanglements of online and offline worlds, fetal-cell and other experimental treatments, and the translocal networks at play in China's rapidly changing healthcare landscape. Innovative and thought-provoking, this book's ethnographic nuance is unparalleled."--Mei Zhan, University of California, Irvine

"This is a breathtaking look at the experimental uses of stem cell technologies in contemporary China. Engaging, articulate, and thoughtful, Song addresses the arenas of stem cell research and experimental therapy at the edges of medicine. She helps readers understand how stem cell therapies become humanized and illustrates the poignant journeys for cures that become entangled in entrepreneurial frameworks of market medicine."--Nancy N. Chen, University of California, Santa Cruz

"Song's pathbreaking ethnography interweaves China and medical anthropology with science, technology, and society studies. It details how, in the age of social media, desperately ill North Americans and a charismatic Chinese physician have helped a new field of bioscience in China emerge. Opening windows onto spheres of life and clinical care that few have examined, Song's stunning work will be influential for years to come."--Matthew Kohrman, Stanford University

Biomedical Odysseys

Fetal Cell Experiments from Cyberspace to China

PRINCETON UNIVERSITY PRESS

Contents

INTRODUCTION

LIGHTS BLAZING AND SIRENS SCREAMING, the honor convoy of fire engines and ambulances launched Jeff Dunn on his transnational quest for medical treatment. The thirty-three-year-old Colorado firefighter and his wife, Cyrilla, were bound for China's capital city, leaving their toddler son in safekeeping as they embarked on their biomedical odyssey. Jeff had been diagnosed a year earlier with amyotrophic lateral sclerosis (ALS), the same disease that had terminated the lives of American baseball star Lou Gehrig and allegedly China's revolutionary leader Mao Zedong. ALS was a death sentence inexorably taking away the firefighter's ability to walk, talk, and ultimately breathe. Jeff's American doctors had told him that there was no cure for the disease that was destroying the motor neurons in his brain and spinal cord. All they could offer him was a bottle of Rilutek — the only FDA-approved treatment for ALS — that slowed the course of the neurodegenerative disease by a few months at a cost of thousands of dollars. Jeff's doctors advised him to complete a last will and testament. They sent him home with a prescription for sleeping pills.

Jeff was now traveling six thousand miles from his home to seek an experimental therapy devised by a neurosurgeon in Beijing — and blogging each step of the way about the procedure that would transplant fetal olfactory bulb cells into the deteriorating corona radiata (white matter) of his brain. Jeff's fellow firefighters and paramedics had set up a blog on their official brigade website to raise awareness about their comrade's plight. Initially a way to solicit donations for Jeff to help him manage the fatal disease, the blog had now become Jeff's digital lifeline to his friends and family back home as he journeyed halfway around the world.

Jeff was not alone in his quest for treatment. Galvanized by the potential of fetal cells to regenerate damaged neurons and restore lost bodily functions, thousands of people from more than eighty countries have journeyed to China since 2001 to undergo experimental treatment. Despite the warnings of doctors and scientists back home, hundreds of people paralyzed by spinal cord injuries and brain damage have sought fetal cell transplantation in Beijing, including a teenager from California who had broken his back snowboarding, a middle-aged man from Istanbul who had fallen sixty feet down an empty elevator shaft, a young lawyer from the Philippines crippled in a motor vehicle accident, a salaryman from Japan struck down by a stroke, and a three-year-old girl from Romania born with cerebral palsy. Hundreds more suffering from neurodegenerative disorders like Jeff have staked their lives on this experimental therapy, including a golf pro from Florida trying to maintain his weakening grip, a newspaper columnist from Utrecht seeking more time with her family, a police officer from Belgium immobilized in a wheelchair, and a schoolteacher from Italy rendered speechless by ALS. I met these people and many more online and in Beijing, all with individual biographies of busy lives arrested by disease or injury.

This book is an ethnographic account of these biomedical odysseys, of why and how people like Jeff — and Derek, Nedim, Michael, Takeshi, Denisa, Doug, Loes, Patrick, and Maria — have entrusted their bodies to Chinese neurosurgeons operating on the cutting edge of experimental medicine. I invoke the metaphor of "cutting edge" in three distinct ways throughout the book: to suggest the latest advances in biomedical science, to focus attention on the embodied experiences of surgical intervention, and to allude to the borderline nature of experimental therapies occurring at the limits of ethics and legality. In a world in which technologies and risks are moving faster than our ethics and laws can keep pace, we need to take a closer look at what we mean by "cutting edge" medicine by examining the experiences of those on the front lines of these experimental developments.

The easy story here is the standard one of exploitation: of desperate patients duped by medical charlatans peddling false hope with their quack therapies. This is the story reiterated by journalists, international medical experts, and other outside critics — but challenged repeatedly by thousands of patients whose very lives are at stake and the Chinese neurosurgeons who have cared for them. This book follows these patients and clinicians from online discussion forums to Chinese hospital wards in order to understand the hopes, frustrations, and possibilities that experimental therapies offer those living with conditions deemed incurable. I bracket my own normative impulse and delve beneath headline news hyperbole in order to investigate the core issues from the diverse perspectives of the participants involved. What convinced Jeff to travel halfway around the world to undergo experimental surgery? What prompted his Chinese neurosurgeons to try out laboratory procedures on human patients? What motivated the Chinese clinic staff — nurses, neurologists, acupuncturists, scientific researchers, information technology specialists, patient coordinators, custodial workers — to work in this experimental setting? Focusing on the participants' perspectives is a necessary methodological and ethical position for studying such a fraught phenomenon in which the stakes are so high.

For people whose futures have been cut short by diagnoses of paralysis and degeneration, what does it mean to take their hopes seriously? Although some patients lived in suburban housing tracts while others inhabited crowded tenements, some were long retired while a few had barely begun life, some had never flown on an airplane before while others frequented business class lounges, they all shared similar stories of frustration from their fruitless encounters with the medical establishment back home. Written off by busy doctors and insurance companies, these patients and their families had turned to the Internet to pursue alternative possibilities. Through online discussion forums, email listservs, patient blogs, and other social media channels, they had discovered a new fetal cell transplantation surgery in Beijing. By undergoing an experimental procedure in a foreign country, each of these medical pioneers was seeking to overturn the prevailing medical consensus that had written them off as hopeless cases.

Facing the limits of conventional medicine and regulation in their home countries, they have not acquiesced to what others consider the inevitable: resignation, hopelessness, death. In the face of overwhelming neurological catastrophes, their hopes have oriented them to life. Their orientation toward a hopeful future is particularly significant given the expanding politics of resignation following in the wake of corporate capitalism around the world (Benson and Kirsch 2010). Instead of giving up, they have tried to maintain what philosopher Ernst Bloch (1986 [1959]) has described as the "not-yet," an orientation toward what has not yet come into being. Bloch's work focuses attention on the temporal dimensions of hope in generating desires about the future. I bring this inquiry specifically into the realm of Internet-mediated health, seeking to examine how the differential chronicity of illness experiences intersects with the temporal variability of digital communication technologies.

In the chapters that follow, I develop an anthropology of transnational regenerative medicine that documents how hope is produced and troubled both online and through physical encounters with experimental therapies transpiring on the fringes of biomedicine. By framing hope as an important affect organizing human engagements with "cutting edge" medicine, I seek to recast our understanding of the experimental in light of a changing political and moral economy in China that enables novel medical practices. I demonstrate how the production of hope is entangled in differences in ethical values, regulatory frameworks, and politico-economic histories that stoke border-crossing quests for regenerative medicine.

THEORIZING A NEW BIOLOGY OF HOPE

As technological innovations enable alternate futures and the processes of globalization accelerate contact between people in far-flung corners of the world, new social relations and subjectivities have emerged that extend far beyond the conventional dyad of the doctor-patient relationship. The new forms of social experience coalescing around biomedical technologies and therapies offer us a critical opportunity to explore the interactions between biological and cultural processes. Researchers studying the social uses of DNA have highlighted the new relationships and subjectivities engendered by genetic knowledge (Rabinow 1996, 1999; Simpson 2000; Novas and Rose 2000; Rapp, Heath, and Taussig 2001; Lee, Mountain, and Koenig 2001; Rose 2007; Wagner 2008; Sleeboom-Faulkner 2010; Montoya 2011; TallBear 2013). But more than half a century after James Watson and Francis Crick discovered the chemical structure of DNA (in 1953) and over a decade since the completion of the Human Genome Project (in 2003), new modes of analysis are being devised as scientists move beyond sequencing DNA and identifying genes to integrating them with the cellular mechanisms of life. In his testimony supporting stem cell research before the U.S. Senate Committee on Health, Education, Labor and Pensions on September 5, 2001, Harvard biologist Douglas Melton (founding director of the Harvard Stem Cell Institute) urged senators to remember that "the unit of life is not DNA nor the gene, but rather the unit of life is the cell. ... Whereas the last century of biology can be said to have focused on the gene and the sequence of DNA, I believe this century will see biologists come to understand and harness the unit of life: the cell, specifically stem cells" (Melton 2001). Social scientists working at the intersection of anthropology and science studies have examined the ramifications of these new cellular forms of life in the contexts of laboratory culture (Landecker 2007; Hogle 2010), animal cloning (Franklin 2007), and assisted conception (Franklin 2013).

As the cell displaces the gene as the central unit of analysis for both biomedical researchers and social scientists in the twenty-first century, we need to rethink how an alternative form of biological knowledge is reshaping human relations and futures. Two decades ago, Paul Rabinow (1996, 1999) launched a deluge of exciting anthropological scholarship on the formation of new collectivities around shared genetic markers. But what different forms of biosociality emerge when we shift our analytical focus from deterministic "markers of identity" to dreams of "pluripotency"? As Aditya Bharadwaj notes in his comprehensive review of anthropological engagements with stem cells in the first decade of the new millennium, a proliferating body of anthropological work has begun to recognize the importance of "theoretically unpack[ing] and ethnographically illustrat[ing] cultures of stem cells both as a medium for gestating cellular form as well as a new medium for exploring ideas about life, knowledge, commerce, governance, and ethics" (2012, 304–5). Rather than the splintering of divergent interest groups along various genetic differences and restriction loci, I argue in this book that the hope embodied by emerging cellular therapies is rallying together disparate groups that may never have come into contact otherwise — from Beijing nurses and former mayors in South Dakota to Kuwaiti princes, Dutch grandmothers, and military-trained Chinese surgeons.

While the Human Genome Project engendered metaphors of a "master plan" or "the book of life" determining our identity (Nelkin and Lindee 2004 [1995]; Kay 2000; Fox Keller 2000), regenerative medicine in the twenty-first century offers a different outlook on human life. Stem cell science and its application in regenerative medicine promise the exciting possibility of transforming our destinies. Endowed with the twin capacities of renewing themselves and differentiating into other cell types in the body (the scientific definition of "pluripotency"), stem cells have proliferated in scientific, economic, and social imaginations. Described as "one of the most fascinating areas of contemporary biology" by the National Institutes of Health (2015), stem cells hold enormous potential for unlocking the secrets of embryonic development and for restoring diseased, damaged, or aging cells and tissues in the human body — the holy grail of the broader field of regenerative medicine. In a fact sheet intended to educate the public on the past, present, and future of regenerative medicine, the U.S. National Institutes of Health (2010) asks us to "imagine a world where there is no donor organ shortage, where victims of spinal cord injuries can walk, and where weakened hearts are replaced. This is the long-term promise of regenerative medicine." The power of the stem cell thus lies in its potential — from producing neurons to generating new organs and replacing failing body parts. As a creative entity with the capacity of transforming itself into seemingly endless possibilities, the stem cell can be understood as the biological instantiation of hope itself.

Hope has been a key analytic for social scientists who study biomedicine and biotechnology. Drawing on her work on the culture of American clinical oncology, Mary-Jo DelVecchio Good suggests that the "political economy of hope" (Good et al. 1990) generated by biotechnology envelops all of us in a "biotechnical embrace" (Good 2001) that leads patients suffering from cancer to pursue experimental therapies and encourages nations to invest billions in medical research. Carlos Novas (2006) examines the "capitalization" of hope by analyzing the efforts of patient advocacy groups that have accelerated research initiatives for rare genetic disorders. Comparing the genomics research industry in the United States and India, Kaushik Sunder Rajan (2006) has articulated the "promissory horizon" of biotechnology as both a "therapeutic realization" on the level of personalized medicine and a "commercial realization" for corporate, academic, and state actors. These approaches emphasize both the financial and affective dimensions of biotechnology by showing how hope in the possibility of a cure is linked to the public and private funding of research, the professional ambitions of scientist-clinicians, the business dreams of entrepreneurs, and the subjective experiences of patients and their families.

The proliferation of clinics offering experimental stem and fetal cell therapies in China capitalizes on the biological potentiality to sell imagined futures in which damaged tissue may be regenerated, lost function may be regained, and previously irreparable organs may even heal themselves. For patients from North America and Europe, these new forms of experimental biomedicine circulating in China leverage their expectations of familiarity for biomedical treatment with the radical othering of a different cultural, legal, and ethical context to produce new horizons of hope. While pursuing the latest technological advances in regenerative medicine abroad, these patients simultaneously circumvent the legal restrictions and ethical qualms stymieing stem and fetal cell research in their home countries. These experimental fields of activity ultimately deepen our understanding of the political and moral economy of hope by illuminating the ways in which regenerative medicine intersects with technology, travel, and the political economies of health care and medical research in a global era.

THE GEOPOLITICS OF STEM CELL SCIENCE AND FETAL TISSUE RESEARCH

The biomedical odysseys documented in this book have been enabled by differing political climates, regulatory regimes, religious values, ethical controversies, and financial considerations in various countries. In Europe, a diverse regulatory continuum has ranged from the outright ban of research on embryos in Austria (Austrian Bioethics Commission 2009), to the criminalization of embryonic stem cell derivation within German borders but permission to import cell lines from other countries (Germany Federal Law Gazette 2002), to British authorization for creating human embryos for research purposes including cloning (United Kingdom 2008). The Catholic Church has played a key role in exerting political pressure on European Parliament members to oppose the use of human embryos in medical science (Pontifical Academy for Life 2000; Minkenberg 2002; Salter and Salter 2007).

In the United States, advances in stem cell science have collided with political and religious controversies surrounding the moral status of the embryo. Although American researchers were the first to cultivate human embryonic stem cell lines successfully in 1998 (Thomson et al. 1998; Shamblott et al. 1998), the excitement surrounding the therapeutic potential of stem cell science ran headlong into President George W. Bush's 2001 executive order restricting federal funding for stem cell research involving the destruction of human embryos (Bush 2001). Although individual states — most notably California (Benjamin 2013; Thompson 2013) — tried to fill the gaps with state-level funding initiatives, the restrictive federal policies stoked fears of a "brain drain" of stem cell researchers to other countries with more welcoming policies (Kahn 2001; BBC 2001; Watt 2006; Longstaff et al. 2013; Thompson 2013). Scientists have not been the only ones looking beyond American borders. The therapeutic potential of stem cells has conjured up previously unimaginable hope for suffering patients awaiting regeneration and repair of damaged body parts. Frustrated by regulatory restrictions and the slow pace of research, increasing numbers of American patients have decided to take matters into their own hands by traveling abroad to other countries such as China to obtain experimental fetal and stem cell therapies.