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...