It would not be an exaggeration to call the Ebola virus disease (EVD) outbreak an unmitigated disaster, resulting in 28,575 infections and 11,313 deaths as of October 28, 2015.1 The three countries that bore the overwhelming burden of the disease—Guinea, Liberia, and Sierra Leone—have been devastated. The situation has been complicated by a slow international response; existing vulnerabilities in the health systems of the affected countries as a result of colonialism, civil war, and systemic poverty; and disease emergence in a previously unaffected region of the African continent.
The disaster is, in many ways, one of the developed world’s making. The response of the World Health Organization (WHO), charged with global infectious disease mobilization and response, was considered a failure, receiving heavy criticism from groups such as Médicins Sans Frontières, which engaged in outbreak response months before the WHO. The United States government allocated an unprecedented US $6.2 billion for funds to combat the outbreak domestically and internationally; the response, however, has been critiqued for building Ebola treatment centers that were neither staffed nor received patients, operating dangerous clinical trials in affected countries, and reacting to unfounded public panic in a manner that threatened the response effort at large.
Despite the failure to respond appropriately or quickly, there have been promising developments that may improve future responses to infectious disease epidemics, including those caused by Ebola virus. During this outbreak, the world witnessed the Director-General of the WHO brief the UN Security Council for the first time in history, leading to a UN Security Council directive issued about the EVD outbreak—the first time the Security Council has officially commented on a public health event. Fifteen years of biodefense spending by developed nations came to fruition, with the emergence of a series of prospective therapeutic treatments and vaccines for EVD, some of which have returned promising results in clinical trials. And—though perhaps too little, too late—it has been demonstrated that without strong global public health systems, epidemics in one part of the world can easily cross national borders.
The 2013–2016 EVD outbreak is perhaps the most significant public health event since the 2003 severe acute respiratory syndrome epidemic and the 2009 H1N1 influenza pandemic; as a result, there now exists a considerable demand for the examination of “lessons learned” from the EVD outbreak and how such lessons might be applied to future infectious disease outbreaks. This volume responds to this demand, but in doing so seeks to inform a broader and—to us—worthwhile project in addressing the problem that arises when a range of otherwise disparate disciplines and fields of inquiry bear on the same problem. In bringing together a multidisciplinary set of scholars, this volume illuminates the ongoing EVD outbreak from a range of perspectives in the life sciences, clinical medicine, the social sciences, law, communications, and the humanities.
A central issue in identifying and responding to infectious disease outbreaks is the complex interplay with human societies and infectious diseases. Few would deny that culture plays an important role in health and health care, but it can often be assumed that culture is more or less constant in geographically localized disease outbreaks involving diseases that are a routine part of the health landscape of a given community. Caregivers and policymakers working in their own societies, during the normal periods of illness (including seasonal illnesses, such as influenza), will rarely have to explicitly reflect on their cultural assumptions.
These assumptions fall apart, however, in cases of severe, widespread disease outbreaks. When outbreaks threaten whole societies, as in the case of the H1N1 1918 “Spanish Influenza” outbreak—which infected an estimated one-third of the world’s population2—or when diseases cross national borders or move between cultural groups, as we have seen with the spread of Middle East respiratory syndrome coronavirus from the Kingdom of Saudi Arabia to South Korea, the background cultural, social, and ethical assumptions behind public health and medicine can break down. The response to EVD faced both of these problems: an outbreak that overwhelmed the countries experiencing the worst of the disease, coupled with international transmission and a global response effort.
This is not the first time in the history of EVD that the tension between society, science, and clinical medicine has presented itself. Barry and Bonnie Hewlett, medical anthropologists invited by the WHO to assist in the 2000 EVD outbreak in Uganda, described the conditions under which the response effort could be self-defeating. The Hewletts found that the disruption of the practice of local burial and funeral customs, distrust of international response teams—even the lack of visibility of patients in treatment centers from the outside—encouraged recidivism and extended the duration of the outbreak.3
Fifteen years later, the situation has grown more complex. The 2013–2016 outbreak, to begin, appeared in a novel location on the African continent. Liberia, Guinea, and Sierra Leone had never been the site of an EVD outbreak before, raising questions about the emergence of the virus: Why had the virus appeared here, and now? Had Ebola virus emerged in a novel location due to ecological disruption in Western Africa? Had the suspected bat hosts changed their range? Was this a new, more transmissible variant of the virus? Or had it always been present in this region, as hinted at by a 1982 paper in the Annales de l’Institut Pasteur?4 News and social media disseminated huge quantities of misinformation regarding the clinical features of EVD, its potential for spread to other locations, and interventions—from quarantine to essential oils and homeopathy—that could curb the epidemic. Nation states, responding to the possibility of a person infected with Ebola virus crossing their borders, enforced travel restrictions and even denied health care workers travel to affected regions. The return of health care workers infected with Ebola virus to developed nations and the first documented incidence of Ebola virus transmission within the United States fueled fears of a worldwide pandemic. The perceived mismanagement of local cases led the public in the United States to lose trust in local, state, national, and global authorities and their ability to manage the public health response to EVD. This loss of trust lead to the creation of an “Ebola czar” position in the US government. The scientific and medical establishment, bringing with them a range of novel potential treatments for EVD, was quickly mired in controversy attempting to balance the ethics and efficacy of testing new interventions.
As scholars whose work on infectious disease covered one or more dimensions of the 2013–2016 outbreak—and, moreover, scholars actively engaged in public outreach—we experienced much of this debate. There were, no doubt, many causes for the controversies that occurred over 2014 and into 2016, but a clear instigator was a lack of rapport between practitioners and researchers who had a role to play in understanding and responding to the outbreak. Sometimes, clinicians demonstrated little consideration for the social and cultural factors of the individual countries (and in some cases, municipalities) that were most impacted by the EVD outbreak in West Africa. Life scientists and epidemiologists often spoke of the concept of “clinical equipoise”—in which there is no agreement in the expert community about whether one treatment option is better than another—as if it were an uncontroversial guiding light in how to justify and design clinical trials, when the literature on that subject is far from settled. In other instances, government officials, politicians, bioethicists, journalists, and social scientists recommended certain kinds of responses, such as travel restrictions, with little knowledge about the basic scientific properties of the Ebola virus. In all these cases, what was missing was an understanding of something beyond the relatively strict boundaries of a particular field of inquiry.
This book is a response to the problem of a lack of links between disciplines. This is not a substitute for diverse interactions and collaborations between researchers, but it is our hope that the following chapters will serve as a way for readers to break the boundaries of their respective wheelhouses and make a start at understanding—and, more importantly, valuing—the work of others. Here, Ebola’s message is a reminder that responding to a complex infectious disease outbreak requires scientific and clinical knowledge, political acumen, anthropological understanding, bioethical reasoning, and journalistic integrity. No one person can have all of these qualities or learn all of these skills. We need each other.
With this in mind, our selection process for chapters reflects the diversity of the outbreak. Our contributors are bench scientists, physicians, political scientists, public relations experts, lawyers, philosophers, anthropologists, epidemiologists, and communications scholars. They come from a wide variety of professional backgrounds, including government, academia, nongovernmental organizations, and freelance. They are, themselves, in a variety of career stages from students to heads of departments, to high-level government employees, to award-winning journalists. They hail from four continents.
The interdisciplinary nature of this volume, moreover, means that some hard choices had to be made about what ground to cover and what to elide. There is, for example, no chapter on the scientific background to developing the novel therapeutic interventions that have been tested and used during the outbreak. Although our chapters in parts III and V do comment on some of the sociological features of infectious disease outbreaks, we do not have a specific chapter devoted to sociology. And while many of our contributors take time to relate their work or expertise to the functions (and dysfunctions) of the WHO, there is no single chapter devoted entirely to the role of the WHO, the World Health Assembly, and the United Nations Security Council.
This volume is divided into five sections. Part I focuses on the Ebola virus and the management of EVD. In chapter 1, Stephen Goldstein explains the virology of Ebola virus as a member of the filoviridae family of viruses. Having established how Ebola infects cells, we move to the clinical management of EVD in resource-rich and resource-poor settings. Patricia Henwood, a two-time veteran of the response effort in Liberia, discusses the challenge of treating EVD in a resource-poor setting in chapter 2, including the unique challenges that EVD presents to caregivers. Michael Connor, Jr. discusses the very recent problem of treating EVD in developed nations in chapter 3, considering the case where resources are plentiful but a lack of knowledge about the disease creates uncertainty about what treatments and supportive care actually work to save patients. Part I enables the reader to distinguish between Ebola as a virus, the disease that virus causes, and the context that makes treating Ebola so challenging.
In part II, the focus moves to delve further into the epidemiology of the outbreak. In chapter 4, Christian Althaus explores the strengths and weaknesses of various mathematical modeling efforts that took place during the epidemic. Then, Daniel Bausch and Lara Schwarz describe how ecology and economics determine the appearance and spread of EVD in chapter 5. Armand Sprecher of Médecins Sans Frontières closes the section in chapter 6 by lending insight into the efforts his organization has made over the past year, how it experienced the spread of Ebola, and the difficulties and frustrations inherent in such work.
In part III, the social, political, and legal contexts of the current outbreak are discussed. In chapter 7, Adia Benton offers insight into the origin stories of Ebola—widely discussed, but often misunderstood—and compares a troubling set of stories that simultaneously assign blame for the epidemic to West Africans while ignoring their violent history at the hands of colonial powers. The legacy of misery and suffering in West Africa is mirrored in Kim Yi Dionne and Laura Seay’s account of the history of racist perceptions of West Africa in chapter 8, beginning with an examination of a 2014 Newsweek cover blaming the EVD outbreak on the consumption of bushmeat. In chapter 9, Alexandra Phelan examines the legal structure that surrounds infectious disease response and how this fared and failed in the context of an unprecedented epidemic of EVD.
Part IV examines the mainstream and social media response to the outbreak. In chapter 10, Cyril Ibe examines the social media response to the EVD outbreak, as well as the use of social media as a tool during infectious disease epidemics more broadly. In chapter 11, Cristine Russell, drawing on a career writing on infectious diseases from HIV/AIDS in the 1980s through to present day Ebola, presents a journalist’s perspective on risk communication in an age of multiple, competing media sources. Marjorie Kruvand completes this part with an examination of the public relations aspect of an epidemic, focusing on how the Centers for Disease Control’s messages were coopted by media over the course of the outbreak.
The final part offers a bioethical perspective on the response to the EVD outbreak. In chapter 13, Michael Selgelid—a member of the WHO ethical advisory panel for the use of unregistered interventions in combatting EVD—offers an account of the role of “clinical equipoise” in the ethics of using unregistered interventions in the outbreak. In chapter 14, Annette Rid details the ethical considerations that drove one of the most controversial aspects of the outbreak response: the pursuit of clinical trials of experimental therapies within West Africa during the outbreak. Rid’s chapter is complemented with one by Morenike Oluwatoyin Folayan and Bridget Haire, who provide a counterargument against the use of randomized clinical trials in an outbreak zone. The choice to include two chapters on the clinical trials issue was intentional on our part, as the ethics of clinical trials in the context of the EVD outbreak split the scientific, clinical, and bioethical communities. Kelly Hills rounds out the section with a discussion of the ethics of quarantine, which played a significant political role in the response to EVD within the United States.
This volume is completed with an epilogue written by Lisa M. Lee, executive director of the Presidential Commission for the Study of Bioethical Issues. Lee, in her role on the commission, oversaw its inquiry into the ethics of public health responses to disease epidemics in light of the EVD outbreak, the first of many attempts to unpack the outbreak and learn from the mistakes that generated the catastrophe.5 Lee recounts this process, and how policy-making bodies can apply themselves to building policies around infectious disease that, we hope, will lead to better results in the future.
It is our belief that, in addition to the exceptional content our contributors have imparted, this work is itself an argument in favor of a specific model of scholarship in infectious disease—one that values multidisciplinary collaboration over academic silos. This work should appeal to a wide range of practitioners, researchers, and educators: There is something in here for everyone, and the chapters were written to incorporate into coursework as readings that are complementary to other studies of public health, medicine, and basic science. An examination of the 2013–2016 Ebola outbreak can serve as a microcosm of the larger challenges present in global public health. If Ebola’s message can be anything, it is our hope that it will be an invitation to work together.