Bioethics Reenvisioned: A Path toward Health Justice

Bioethics Reenvisioned

STUDIES IN SOCIAL MEDICINE

Allan M. Brandt, Larry R. Churchill, and Jonathan Oberlander, editors

This series publishes books at the intersection of medicine, health, and society that further our understanding of how medicine and society shape one another historically, politically, and ethically. The series is grounded in the convictions that medicine is a social science, that medicine is humanistic and cultural as well as biological, and that it should be studied as a social, political, ethical, and economic force.

Bioethics Reenvisioned

A Path toward Health Justice

Nancy M. P. King, Gail E. Henderson, and Larry R. Churchill

The University of North Carolina Press CHAPEL HILL

This book was published with the assistance of the H. Eugene and Lillian Lehman Fund of the University of North Carolina Press.

© 2022 Nancy M. P. King, Gail E. Henderson, and Larry R. Churchill

All rights reserved

Set in Merope Basic by Westchester Publishing Services

Manufactured in the United States of America

Complete Library of Congress Cataloging-in-Publication Data for this title is available at https://lccn.loc.gov/2022017105.

ISBN 978-1-4696-7157-4 (cloth: alk. paper)

ISBN 978-1-4696-7158-1 (pbk.: alk. paper)

ISBN 978-1-4696-7159-8 (ebook)

Cover photo: Landscape with rural roads © vulcano/Shutterstock.com.

Chapter 3 incorporates L. R. Churchill, Three Kinds of Humility in Bioethics Certification, Perspectives in Biology and Medicine 63, no. 3 (Summer 2020): 420–28. The material is copyright © John Hopkins University and is used here with permission.

We dedicate this book to the memory of Richard W. Robeson (1951–2020): husband, colleague, and friend; a creative, artistic force in medical humanities teaching; and through his work and his presence, an advocate for social and racial justice who has enriched our vision for what is possible.

Contents

Acknowledgments

Introduction

CHAPTER ONE

It Shouldn’t Take a Pandemic

Social Determinants of Health and Illness

CHAPTER TWO

Lifeboat Ethics, Social Selves, and Health Justice

CHAPTER THREE

Lifeboat Frameworks, Certification, and the Work of Clinical Bioethics

CHAPTER FOUR

How Neglecting Health Disparities Promotes a Truncated Research Agenda

CHAPTER FIVE

Bioethics and the Global Warming Crisis

Conclusion

Notes

Bibliography

Index

Acknowledgments

We have many people to thank for their help, not only with this volume but also for the myriad ways in which they have shaped and strengthened our thinking over the years.

First, most directly for this book, we are deeply grateful to Kriste Kuczynski, who provided extensive and essential support, good humor, and efficiency during the entire process of manuscript writing and preparation. Substantial assistance was also provided by Stephannie W. Seaton, who helped us compile resource materials.

We offer special thanks to our UNC colleague Arlene M. Davis for joining us as co-author for Chapter 3. Her insights into the rich moral texture of hospital ethics consulting were truly invaluable. Special thanks also to Jay Kaufman, at McGill University, who provided generous tutorials on the history of social epidemiology, and advice on how to best portray this important field for bioethics.

Colleagues who provided suggestions and feedback on chapters in the book include: Jeffrey H. Sonis, Victor J. Schoenbach, Allison E. Aiello, John C. Moskop, Ana S. Iltis, Andrew Jameton, David Schenck, and Wylie Burke. All helped improve our thinking and our writing in a wonderful variety of ways. We also thank two anonymous reviewers for the Press.

We are also profoundly thankful for our time together in the Department of Social Medicine at UNC-Chapel Hill, a rich and unique model for interdisciplinary research and scholarship. There we learned together and taught each other about bioethics, the interconnection between social medicine and social justice, and possibilities for combining empirical and conceptual bioethics research. There are many colleagues and former colleagues to whom we owe a debt of gratitude—in Social Medicine, at Vanderbilt University and School of Medicine and at Wake Forest University and School of Medicine, as well as colleagues around the country and the world. They have all helped us over the years to sharpen and strengthen our views about justice and the core values we aspire to in this book. And finally, thanks to Sande Churchill and Mike Cohen for enthusiasm and support all along the way.

We are grateful for all these contributions, and for the opportunities we have had, through working on this book, to know and learn from so many towering scholars in the field and its many related disciplines. Any flaws or shortcomings of the book are of course entirely our own.

Bioethics Reenvisioned

Introduction

Bioethics is a young field. It developed quickly in response to the needs of clinical medicine and human research and drew initially on the traditional professions of philosophy, law, and theology. As a result of these origins, throughout its fifty-year history, the field has focused primarily on a single dimension of the ethical implications of health and disease: medical decision making by and for individuals. This is true whether the issues of concern have been power imbalances in the patient–provider relationship, exploitive research with human subjects, or the oversight needed for translation of scientific advances into health care. The coronavirus pandemic has made this narrow, medicocentric focus even more evident; the field has until very recently largely ignored upstream social determinants of health, including the structural inequities and systemic racism in U.S. society. With notable exceptions, the interdisciplinarity that has characterized bioethics has been almost exclusively in the service of a highly individualistic agenda.

This book seeks to free bioethics from that confining tradition by analyzing the forces that brought it about and sustain it, with particular attention to the way matters of justice in health and health care have succumbed to what we term the lifeboat ethics trope. We argue that this trope has been detrimental to bioethics’ self-understanding and the definition of the proper sphere of practice for the field. We examine in particular the deleterious effects of this self-understanding on bioethics work in both the clinical and research realms, challenging how certification for clinical ethics consultants narrows the meaning and scope of bioethics expertise and arguing for a more robust role of bioethics in shaping health-related research agendas.

We recognize the importance of the work that everyone in bioethics does to address questions and problems at the level of individual health-related decisions and relationships. These issues are persistent and pervasive; the field has tackled them with great success, and at the same time, all would agree that they need ongoing attention. But if individual-level problems and slice-of-time questions are allowed to eclipse the social contexts in which all such issues arise, then bioethics perpetuates privilege by implicitly endorsing a profound lack of attention to significant and ongoing health disparities and failing to help ameliorate them. We therefore argue that bioethics scholarship, research, practice, and education must do a better job of incorporating the perspectives of public health and the social sciences and must do more to address and help ameliorate the structural inequities that so clearly result in profound health disparities for people of color and economically disadvantaged communities both at home and abroad. We also argue that bioethicists can and should play a role in addressing the macro-problems of global warming, which are plainly tied both to health disparities and to structural injustice. In short, we show why bioethics as a field has a responsibility to work upstream as well as downstream and to work on social and global issues as well as individual and local ones. To begin to fulfill this responsibility, we argue that there is a place for advocacy and activism in bioethics work, and we call for an expanded paradigm for bioethics education and collaboration as the way forward.

As authors, we make these arguments from a shared perspective forged by decades of working together in the University of North Carolina (UNC) School of Medicine’s Department of Social Medicine. This academic setting differs from most bioethics programs in the United States, which are typically housed in departments of medical humanities or centers for medical ethics or bioethics. Many of these programs are closely allied with humanistic disciplines, such as medical history, law, or literature, or with specialties, such as pediatrics and internal medicine, that have historically recognized the usefulness of clinical medical ethics. By contrast, social medicine links bioethics with medical care financing and policy; the political economy of health; sociological and anthropological studies of health, health behavior, and health care organization and delivery; and preventive medicine and public health. The interdigitation of these areas of study is realized in both the teaching and research agendas at UNC and is embodied in the three editions of the Social Medicine Reader. The Department of Social Medicine has continued to broaden and deepen its interdisciplinary commitment to social justice, adding likeminded faculty whose core work exemplifies the values we aspire to in this book.

King was introduced to bioethics as an undergraduate, when she heard about a new publication: the Hastings Center Report. She earned a law degree in order to do bioethics and joined the Department of Social Medicine in 1983, learning bioethics from the perspective of social medicine and incorporating the medical humanities into teaching. She moved to Wake Forest University School of Medicine in 2007 to create and codirect the Center for Bioethics, Health, and Society and the Bioethics Graduate Program at Wake Forest University. Her work addresses a range of issues, including informed consent, benefit, and uncertainty in health care and research, and the development and use of novel biotechnologies; her interest in justice issues is a natural outgrowth of doing bioethics in interdisciplinary academic environments addressing patients’ lives in social context.

Henderson, a medical sociologist with training in public health, began her research career looking at societal justice in China in the 1980s, studying health care trade-offs between equitable allocation of low-cost public health resources and investment in high-tech medical care that inevitably fostered inequality. Her interest in bioethics began through a series of interdisciplinary collaborations (with Churchill and King, among others) that focused on why people join clinical trials and, in particular, cutting-edge, first-in-human trials, in which prospects of benefit and risks of harm are most uncertain. As a social scientist, she was drawn to understand the ethical implications of empirical data on how investigators as well as research subjects make sense of the promises of biomedical science, revealed in cure trials for genetic conditions and HIV. Much of her research has been funded by the NHGRI Program on Ethical, Legal and Social Implications of Genomics Research, which funded the UNC Center for Genomics and Society, directed by Henderson from 2007 to 2019. She also served as Social Medicine Department chair from 2009 to 2015.

Churchill, educated in philosophy and religious studies, began as a researcher and teacher of medical ethics and humanities in 1973. Questions of justice in medical care and health policy have been a consistent focus of his writings since the publication of Rationing Health Care in America (1987). He was led to connect the individual care of patients with larger social, cultural, and political issues through collaboration with his social science and clinical colleagues at UNC–Chapel Hill. He served as chair of the Department of Social Medicine from 1988 to 1998. Following his move to Vanderbilt in 2002, his chief focus was interviews with clinicians and patients about the larger meanings of care and healing, as well as the critical elements of clinical ethics consultation. In sum, our work at all these institutions has provided formative experiences for the broader understanding of bioethics and social justice in health that is reflected in this volume.

The field of social medicine antedates bioethics by about a hundred years. Rudolph Virchow, the nineteenth-century German physician, well known as the father of modern pathology, is also a founding figure for social medicine. He believed doctors are the natural advocates of the poor. For Virchow, social medicine meant the application of medical knowledge to social problems, exemplified in his time by the health problems caused by industrialization, such as long working hours, low pay, crowded living conditions, poor sanitation, and deficient nutrition. In the twenty-first century, the patterns of COVID-19 incidence, severity, and mortality; the medical and public health responses; the displays of political ineptitude; and the underlying economic deprivation of minoritized populations are fruitful areas for social medicine. Hence this book, with its arguments for a more socially and politically engaged bioethics.

We appreciate that some aspects of what we emphasize in this volume are far from new, and in each chapter, we acknowledge and quote from some of our likeminded colleagues in bioethics and related areas of scholarship. Still, our conviction as we began is that a more complete accounting of the problems with the dominant mode of doing bioethics needs to be articulated and that areas for future collaboration, and their rationale, should be better defined. In short, the way forward for bioethics cannot be a simple extension of our past concerns but must be a far more socially engaged and collaborative way of proceeding, one that makes current forms of injustice—both downstream and upstream, both individual and social—a primary aim of our work. That is what we have sought to achieve in this volume. No doubt, the work of articulating and justifying this social pivot for bioethics is incomplete. Our hope is that others in the field will pick up this task and help push it forward.

The volume begins with what we know about health inequalities and inequities from the perspective of empirical data, beginning with Virchow and scholar-activists of his era who first described the social determinants of health. The chapter reviews how thinking about social causality was challenged by emerging knowledge in medicine and public health—the germ theory of disease causation and subsequent rise of statistical capabilities to predict an outcome even when the mechanism was not clearly defined. We chart three eras in epidemiology and the so-called epidemiology wars, which pitted focus on social structure against individual-level factors as key to understanding why and how health disparities emerge and persist. Underlying, enduring social determinants that remain despite the specifics of particular conditions under study are fundamental causes; here, poverty, reduced educational opportunities, housing segregation, and curtailed access to health care can credibly claim key causal roles. In the United States, race and ethnicity are essential to this story, so the chapter devotes attention to these factors, their measurement, and recent attempts to define racism as a fundamental cause of inequities. We conclude with the unfinished business of COVID-19, focusing on the United States but recognizing that emerging data are undeniably relevant to the global circumstances of injustice that have been revealed by this pandemic.

In chapter 2, we begin the rethinking in bioethics needed to account for the importance of social determinants of health. We examine the trope of lifeboat ethics, its derivation from contemporary medical concerns, the appeal it enjoys, and its presumption of moral individualism as the primary locus for bioethics work. A brief history of lifeboat thinking in ethics is presented, including Garret Hardin’s harsh lifeboat, U.S. v. Holmes, and the work of the Swedish Hospital Committee for allocation of renal dialysis of the 1960s. The methods that inform these cases prefigure the allocation discussions surrounding COVID-19 that began in 2020. We then use the COVID-19 pandemic to analyze structural racism as it occurs in medical lifeboats. We argue for a view of justice that understands individuals and their moral issues as inextricably embedded in social networks and forces. Our argument is that individualism deforms matters of justice in health and that without a social view of persons, bioethicists will continue to neglect important upstream characteristics of social and health injustice. To conclude the chapter, we examine the work of theorists of justice such as Charles Taylor, Norman Daniels, Michael Walzer, and Madison Powers and Ruth Faden, in terms of their ability to help us understand the social sources of health care injustices.

Chapter 3, coauthored with our colleague Arlene M. Davis, continues the examination of the detrimental effects of lifeboat thinking in bioethics through an analysis of the American Society for Bioethics and Humanities’ promotion of certification for clinical consultative work. We interrogate the assumptions of sample cases from the certification exam and find that the exam perpetuates the individualist orientation that characterizes many of the regnant theories of justice in bioethics scholarship. We argue that this certification effort leads us further away from, not closer to, the broader questions of justice that bioethics needs to address. We question the notion of expertise endorsed by the certification exam, contending that it presents an impoverished ideal. We also claim that the most glaring weakness of the exam is its failure to accurately represent the actual work of bioethics consultants. Our analysis draws upon the accounts of experienced bioethics consultants, as well as patient accounts; both describe the skills important for such work in terms that cannot be measured by an online engagement in a multiple-choice format. In conclusion, we argue for greater humility in describing the skills needed for effective consultative work.

In chapter 4, we examine bioethics scholarship, practice, and service in the research context, addressing research ethics, empirical and conceptual bioethics research, and human research conducted in multidisciplinary teams that include bioethics researchers. We contend that the narrow lifeboat perspective of clinical ethics has a counterpart in the research context and thus that research ethics and bioethics researchers have paid insufficient attention to the social determinants of health, health disparities, and social and structural injustice for several reasons. Most human research is conducted in clinical settings and receives funding support from entities interested in furthering the understanding of diseases and development of interventions to ameliorate them. Most research ethics scholarship focuses on the researcher–subject relationship. Justice is the least developed of the Belmont principles, and the regulatory oversight of human research pays it scant attention. In consequence, although public health and social medicine researchers have long studied the social determinants of health and the causes of health disparities, bioethics has in large measure failed to follow suit. We argue that learning health care systems are well positioned to undertake research agendas that prioritize considerations of health justice and that bioethics can play a leadership role in facilitating such research. At the same time, we acknowledge that research addressing the upstream social and structural causes of health disparities is complex and challenging. Nonetheless, we believe that bioethics collaboration may be of particular help in avoiding research that risks exploiting underserved and underresourced communities and in promoting genuine and fruitful research engagement with those communities.

In chapter 5, we explore the importance of Van Rensselaer Potter’s vision of bioethics and its relevance for the major bioethical problem of the next several decades, namely, global warming. We review the scientific data on the forthcoming crises of the Anthropocene and summarize the small number of scholarly bioethics essays that address these crises. Like COVID-19, global warming illustrates profound problems of injustice. The richest individuals and nations bear the most responsibility for polluting the environment, yet poor nations and individuals will bear the most severe consequences, both in health outcomes and more generally in their capacity to survive. We trace the social and moral causes of the Anthropocene to five assumptions and the toxic habits that follow from them: short-term thinking, political incompetence, the belief that humans are the crowning end point of evolution, a conviction that consumption is the measure of our worth, and fantasies of transcendence and rescue. We explore the concept of biophilia in the work of Eric Fromm and E. O. Wilson and argue that it is central to shaping a more responsible and survivable future. Finally, we argue for alternatives to these attitudes and habits with an agenda for bioethics work, including suggestions for reviving some neglected virtues, expanding bioethical principles, and adopting maxims to meet the enormous challenges we face.

Our conclusion acknowledges that justice work has long been the focus of many in public health and health law and that it has recently and rapidly been recognized as vital in medicine and human research. Yet even though justice has also been addressed by some in bioethics, the field’s consideration of justice remains patchy and thin; in many ways, it has only just begun. We highlight the important role of advocacy as a means of promoting attention to social and structural injustices and health disparities, and we point to ways that everyone who does bioethics work can broaden their consideration of health justice, in order to contribute to this essential reorientation of the field.

Although we seek to expand the field’s scope and vision to embrace justice as a central concern, we do not intend that justice should be a primary focus for every individual doing bioethics. We do, however, believe that justice should be of profound concern to all in the field. We hope that at the very least, we can spur a robust and sustained conversation about justice in every aspect of life, well-being, and health that is or should be touched by bioethics.

A Note on Authorship: In interdisciplinary scholarship and publication, it is customary that authors take the lead in drafting sections of the writing according to their differing knowledge and depth of experience. That is true for us as well. However, in all other aspects of the conceptualizing, writing, and editing, we functioned in equal partnership through hundreds of conversations, with complete concurrence about all aspects of the final product. All three of us accept full responsibility for everything that is said here, as well as for any errors and omissions.

CHAPTER ONE

It Shouldn’t Take a Pandemic

Social Determinants of Health and Illness

Until the COVID-19 pandemic began to reveal the need to consider broader issues of public health and access to treatment, much of bioethics focused on bedside issues. When justice questions arise at the bedside, they generally take the form of fair allocation and rationing of medical resources, as well as rival notions of who should be helped when not all can be helped. This discussion is important. Yet other, larger issues are neglected while lifeboat ethics has driven ethical resources away from persistent and systemic problems.¹ In 2020, we made this argument: Questions of fair distribution do not suddenly appear at the bedside as novel issues of allocating ventilators; they are baked into the social fabric. The injustices of an allocation system driven by market forces can remain tacit in normal times, fostered by the perception that health inequities in the United States are natural and normal, rather than themselves the equivalent of a modern plague.² The current pandemic amplifies and makes more visible the devastating results of these injustices. Yet bioethics as a field has been beguiled and distracted from these larger issues, when we urgently need to address them as well.³

With the advent of the COVID-19 pandemic, attention has shifted to societal-level macro-issues that have long been addressed in the social sciences and social epidemiology, such as the social determinants of health and illness, the structural racism that magnifies the burden of disease for people of color, and the effects of dismantling the infrastructure for public health resources that play a major role in determining health.⁴ Reflecting critically and productively on the larger question of what we as a society owe those of us who have been disadvantaged by long-standing social, economic, and cultural factors is not a problem that fits neatly into bioethicists’ roles in academic medicine—a topic we take up in later chapters. Instead, it is a problem that requires significant and extensive collaboration across the field’s many disciplines.

It requires going beyond the theory and practice of distributive justice in order to pursue questions that are deeper and more consequential, as well as messier, more complicated, and considerably more difficult than those that accord with lifeboat ethics.

The goal of this chapter is to situate thinking about social determinants of health in the history of changing ideas about disease causation, reviewing major theorists as well as methods used to develop and support those theories. We consider how the collection of relevant data has evolved, how changing analytical methods have been applied to these data, and how innovative measurement perspectives demonstrate the associations between social factors and health outcomes. Taken together, these developments provide information and insights to assist bioethicists on this journey to incorporate and apply a broader understanding of justice and health.

Biological Reflections of Social Fault Lines

As Paul Farmer wrote in his 1999