INTRODUCTION: FEAR AND TREMBLING

“I have pronounced many individuals dead, and, believe me, I am nervous and on edge when I do.”

—EDWIN H. ALBANO, New Jersey Medical Examiner, September, 1968

“When all is said and done, it seems ironic that the end point of existence, which ought to be as clear and sharp as in a chemical titration, should so defy the power of words to describe it and the power of men to say with certainty, “It is here.””

—EDITORIAL, JAMA, 1968

“More and more, we are going to die when someone makes the decision that we are going to die.”

—The New York Times, February 2, 1997

My first night as a doctor began with a request to declare a patient dead. Unexpectedly, a question came to mind: How do I know this person is dead? On the one hand, I was fairly confident that his heart was no longer beating, that he was no longer breathing, and that he was, dead. But when handed the task of formal declaration—of officially and permanently drawing the line he had crossed—I hesitated. Initially, that hesitation centered on deciding which method would best verify this apparent absence of pulse and breathing. I sought evidence of the slightest movement of heart and lungs as the magnitude of my pronouncement sunk in. How was I sure? Should I get an electrocardiogram (ECG)? In fact, I did get an ECG, and obsessed some more over the accuracy of my examination. But as the initial uncertainty receded, another took its place. I was confident in my physical findings, but how did they translate into a notion of death? What did that label mean, and did my findings clearly add up to such a meaning?

Since then, an additional consideration came to mind: Was the question of meaning, however fascinating, relevant to the task at hand? That final question loomed larger as I later became a more focused student of history and looked at debates over the appearance of an alternative definition of death that emerged in the late 1960s—brain death—through that lens. A strange combination of certainty and lingering pause, of natural “fact” and metaphysical speculation, has always swirled around the task of defining death. Not surprisingly, a vast body of literature is devoted to examining brain death’s meanings and conceptual features. But whether these kinds of questions about medicine’s “meanings” get us closer to addressing the challenges of connecting medical practice with our values seemed to me to be less clear.

“Brain death” is a fascinating medical fact. For one thing, it remains controversial and debated despite also being widely and routinely used as criteria for declaring death around the world. What do we make of the scenario where something presumably so clear—the time of death—should remain controversial and uncertain half a century after the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death and its chairman, Massachusetts General Hospital (MGH) anesthesiologist Henry K. Beecher, proposed to define it in a Report published in 1968?1 Criticism of brain death criteria began with criticism of the Committee’s work. This book revisits the sources for the Harvard Committee’s Report and essentially makes two arguments. The first is to challenge prevailing historical characterizations of the Report as ethically unsophisticated, problematically focused on transplantation, and lacking a conceptual justification and empirical basis for this way of understanding and defining death. The second is to describe why correcting this history is important. It is important, briefly, because these prevailing characterizations have tended to rest on drawing a distinction between medical knowledge, and ethical expertise over its use; between medical facts themselves, and the values implicit in them. If the history needs revision, perhaps these driving assumptions about how to relate ethics to medicine do as well. Challenging each historical characterization allows room for a different focus—a focus on alternatives to a distinct ethics-perspective for managing the value dimensions and consequences of medical facts. Taking on some of the roots of controversy over the fact of brain death opens up larger questions about how to approach the value dimensions of medical facts, and of healthcare more generally.2

Since the Report appeared in the United States, the criteria were reviewed and endorsed by presidential commissions in 1981 and again in 2008, and were updated and adopted by the American Neurological Association in 1995 and 2010.3 Yet the past half-century has also seen continual challenges to the credibility and appropriate justification of these criteria. Brain death was an early target of a group of American intellectuals in the late 1960s and early 1970s who claimed that since medicine was a source of ethics and values, it needed to be managed with the study and application of ethics expertise. A growing network of analysis, literature, review processes, and oversight mushroomed from this claim over the following decades under the umbrella of “bioethics.” Eventually, institutionalized responsibilities for ethics review and oversight were implemented within healthcare institutions ranging from the World Health Organization to every hospital in the United States. No aspect of human experience or culture, other than perhaps formal religious practice, has likely witnessed routinized application of “ethics” of this intensity. Why, and to what effect?

Fascination with tidying up deep and unruly questions of what life essentially means is understandable, but looking over the cumulative result of decades of such debate over brain death proves disappointing. There has been very little change in the basic terms of this debate, which reads as a relentlessly circular conversation, dissecting the conceptual groundings for a definition of brain death. This effort to define the essential concept of what we call “death” was elusive, and not clearly productive.

The Report, and initial efforts that would herald the appearance of bioethics as a field, engaged each other early on. So the unfolding of the brain death debate is a good place to start to ask these questions about ethics and medicine. That medical facts could be contingent and carry values and meanings was not a new insight, and it was voiced frequently by Beecher among others. Joseph Fletcher—a friend and confidante of Beecher’s, a theologian and public intellectual who engaged early on the implications of health technologies for moral values, and a strong proponent of using brain death criteria—wrote, soon after the Harvard Report appeared: “The picture of what has happened in the technology of medicine and paramedical care fills us, ambivalently, with fear and confidence, assurance and doubt—both as to the facts themselves and as to the value-meaning of the facts, their ethical significances.”4 Should medical facts define important meanings? Are these facts and explanations merely data and free of meaning, or do they, and should they, broker choices over core values?

The asserted need to draw distinctions between medical facts and values lay at the heart of early bioethical critiques of brain death, and justified the routine use of expertise about values and ethics to inform and shape how medicine and research are practiced, and how dilemmas in care are resolved. This book suggests that this strategy failed when looked at through the lens of brain death. The ways in which brain death made sense as a medical fact to those who first described it in detail provides an opportunity to consider alternative strategies for managing value-laden, contingent, and iterative medical facts.

How did I know that man I was called to see was dead? To answer that I recognize that I could “know” in the sense of mere data, of a fact made plain because of its tangible, interobserver reliable features. I could also know through connections I make in what those features mean or associations and values I put into them. Especially in the medical context, those ways of knowing are inextricably talking to each other. The designation and distinction between the categories of “the normal and the pathological” require that exchange.5 How biological signs are consigned to normalcy or to pathology is steeped in mere data from the body, but also in how those data turn out to instrumentally work for us to do things. Lived experience and mere data push back on each other in ongoing, iterative fashion, continuously remaking what we can, or want to, reduce to medical data.

Keeping pace with the walking biological creatures that we are requires, if not demands, a pragmatic point of view of medical knowledge, as well as of medical values. Paying attention to how medical knowledge yields predictions and solves problems is a foundational starting point for describing the values surrounding it. Brain waves, physical examination, and other building blocks and signals used to describe the working brain, for example, are integral to the moral valence of describing brain death as death. How these “mere data” were composed and worked with other mere data set limits on the perceived or allowable scope of credible medical action, and of possible descriptions for death and dying. Bending medical facts towards purposes we value requires a deeper curiosity than work in bioethics has tended to bring to bear about how medical knowledge works, and the tools it has to work with.

The explosive growth of bioethics was a response to a loss of faith in the pragmatism of the medical point of view, of the thought style and structure of medical knowledge as a source of values. Paradoxically, the spread of bioethics did little to alter the spread of biomedical power and instead, some have argued, fueled it. At least in the case of brain death, attempts to split off and separate analysis of value from analysis of fact failed to rein in the power of mere biomedical data. Work in bioethics may have started from pointing out the composite fact–value nature of medical facts, but did not take it seriously enough. History matters in all this. It has frequently been used to support a story of the necessity of bioethics to solve dilemmas in medicine. That use of history has eclipsed other possibilities for history to be better used to understand how medical knowledge works, and point to more effective ways to improve it.

Moral or ethical claims about how medical providers should act, or what patients deserve, or whether brain death is credible, have traction to the degree they match up, not along ethical categorization or rules of moral philosophical argument, but along the constraints and possibilities of practice and knowledge that come from probing and querying the body. The challenge may be made that in making that point I argue the limits of ethics but use one of its tools to do so—that it sounds like I may be choosing Pragmatism as one ethical or philosophical position over others, and that I need to justify that position. Indeed I will refer, as Beecher himself did, to Beecher’s pragmatism. I resist, though, the assumption that making that point is a philosophical claim. We can observe people acting and knowledge working pragmatically. It is possible to make that point as an observation, which is consistent with the findings of this history, not as a philosophical claim. If such an observation turns out to fall within one philosophical subject heading or another, that is an accident. It does not provide a basis for agreement or disagreement.

As it is possible to base conversations about the purposes of medicine by starting with curiosity about the structure of medical knowledge itself without signing up for a particular school of ethical thinking, it is also possible to do so without, at the other extreme, descending into pure naturalism or scientism. This is something both liberal and conservative bioethicists often fear. Avoiding that was something Beecher actually explicitly voiced. It is a justified fear, one that has long complicated political and cultural support of science and scientific stewardship of social and technological progress, but it is one that has arguably been best wrestled with pragmatically, rather than morally.6 The ability to define what kind of healthcare is “better” “equitable,” or “just” will require more attention to how to leverage the pragmatic learning internal to medicine differently, and less attention to either expert-detailed or slogan-inspired moralized categories and language. Our ability to make that shift has large consequences. It may ultimately determine whether the use of medical knowledge in modern societies is affordable, accessible, or effective.

A careful history of brain death proves useful for exploring this larger context. This is especially so because of the degree to which historical characterizations have tended to reinforce what the emerging bioethics discipline wanted to hear about the idea of ethical experts arbitrating the consequences of living in a biomedical culture. Within the field of bioethics, the historical characterizations of bioethics and of brain death have tended to support each other along a shared narrative trajectory. This narrative first describes bioethics as a needed rescue from the ways that medicine masked as objective facts what were really moral choices. Second, brain death was a perfect example of how badly medicine needed bioethics in this way. After all, critics argued, the practices comprising brain death were not only moral choices, beyond the purview of physicians. These practices also appeared to be attempts, on the part of physicians, to hide what should be public agendas, in this case to expand transplantation and access to organs without direct public sanction.

Neither of these aspects of the narrative hold up to scrutiny. This book focuses on the work of key members of the Harvard Committee in the decades preceding their Report and challenges the usual storyline of the Committee as unduly invested in transplantation. Instead, the book explores how brain death architects arguably engaged many of the same issues that the bioethical narrative lays unique claim to. Correcting, or at least complicating the history of brain death therefore complicates a prevailing narrative of bioethics as the go-to strategy for managing complex medical facts, thereby opening new routes of consideration for how to manage biomedical dilemmas.

A revised history of brain death provides an entry point, then, for reimagining the core concerns of bioethics including autonomy, paternalism, beneficence, experiment, progress, and agency in medicine, reframing these as enduring and, in essence, morally ambiguous, practices. Rather than belonging to the discipline of ethics, these core concerns can be understood and treated as the result of historically specific conditions of practice and as features of complex applied medical knowledge.

These broader conclusions emerged from exploring historical questions specific to this book: What were the experiences and purposes of the original architects of the definition of brain death? What was the context of medical practice within which this new definition made sense? Answers came in part from medical records at MGH in the 1950s and 1960s detailing the care of hundreds of patients with coma—the data and experience from which the Harvard definition essentially emerged. Answers also arose from consideration of chairman Henry Beecher’s attitudes and actions with respect to rules for human experimentation, especially in the context of 1960s debates over moral theology and the challenges of secularism and social change. These sources described a quite different historical narrative of the Committee, and so led to my own confrontation with the assumptions and history that anchor the bioethical project. In the field of bioethics and in medical humanities scholarship, the prevailing characterization of the Committee’s work as medicine-run-amok did not add up. I found Beecher’s justification for the Committee to be grounded in considerations of ethics and, more importantly—and instructively—in dilemmas arising from challenges in the use and generation of medical knowledge, especially experimental knowledge. Given these expanded considerations, bioethics in general—and criticisms of brain death in particular—appeared less as a solution than an anachronism, a fetish over moral meanings actually ill-equipped to handle the values, fears, attitudes, and expectations that drive dilemmas in healthcare.

Among those attitudes were strangeness and ambivalence. For some healthcare providers and families, the option of declaring brain death allowed for a humane course of action; while for others, brain death carried the sinking feeling that they were in over their heads. Should anyone dare assert control over the nature of life when it seemed (and continues to seem) so strange to do so? Palpably and repeatedly rehearsed within medicine, these tensions—between extremes of comfort and strangeness, relief and foreboding, knowledge and skepticism, fact and metaphysics, choice and fate, resentment and comfort—have accelerated considerably throughout the twentieth century and continue to gain momentum at the outset of the new millennium, as our capacities for manipulating our genes or our neuronal circuitry seem to only be warming up. Twentieth-century and early twenty-first-century Western societies in particular are, increasingly, biomedical cultures. And yet the unavoidable disconnect between everyday lived experience and, conversely, our experiences as medical subjects or biological objects creates anxiety, wariness, and ambivalence alongside the hope often attached to advancing medical routines and prerogatives.

This enduring and intense ambivalence that drove the flight into ethics deserves more attention. On the one hand, medicine was—and is—faulted for too often offering marginal benefits while risking prolonged suffering with intrusive, intensive, technological capabilities and manipulative powers over the body. On the other hand, these same capabilities continue to be desperately and widely sought as a source of great benefit, comfort, and progress. They are yearned for and also guarded against. Despite the scrutiny of physician authority that began to grow in the mid-1960s, biomedical authority—that is, the broader use of biomedical methods, expertise, vocabularies, and sciences to explain who we are and how we are doing—persisted, if not flourished. Biomedicine’s stock rose higher as that of physicians’ declined through the end of the twentieth century and into the twenty-first.

We manage these complex expectations wth complex facts. The peculiar suspension of nonsentient human life made possible by respirators and other intensive care technology from the 1950s onward lent urgency to the task of describing or defining death as a standard, criteria-based fact. While intense wariness over the strangeness of the comatose body helped fuel ethical scrutiny over medicine, the mix of implicit meanings and pragmatic purposes attributed to the new phenomenon of brain death were (and are) common—if not essential—to other medical facts whose definitions are intended to provide more predictability and actionability in managing our biological selves. These include less dramatic negotiations such as setting appropriate frequency for screening mammography, establishing cutoffs for high cholesterol, or ranking the effectiveness of sequential choices of chemotherapy. These practices may not be as rich in existential meaning as defining death, but they too present the common, if not unavoidable, contingency and value dimensions of medical facts.

Managing the ambiguity of the uniquely “modern fact,” one that could be “represented either as mere data … or as data gathered in the light of a social or theoretical context that made them seem worth gathering,” is a core task of modern capitalist societies.7 This task is central to the uses and misuses of public health and investments in healthcare. We need histories and other tools to learn and be curious (and demanding) about this contingency and complexity of medical facts, both as mere data and as instruments for action within specific contexts. At least with respect to the debates over brain death, much of the work attributed to bioethics did not yield new learning or knowledge. It instead tended to confuse cleverness with new knowledge, reflection with action, and analysis with actual solutions. When bioethics did make real impact, such as defining now widely used procedures for review of research and informed consent, it did so through precisely the kinds of technocratic routines it originally set out to reject.8

This book arrives at these larger themes starting from a smaller focus—how to make sense of hundreds of medical records that describe the care of comatose patients at MGH in the decade leading up to the Report. That care was very much influenced by a key architect of the specific criteria announced in the Report: Robert Schwab, who was a colleague of Beecher’s and a neurologist at MGH. These records, along with the medical and legal literature on coma of the time, capture the cautiousness and complexity of the movement within hospital-based medical practice to adopt and name brain death criteria in response to what I call the experience of “death before dying.” This term describes the quite new and distinct ability, emerging through the 1950s and 1960s, to act on bodies in the medical context in a way that suspended functioning, brought an expanded scope of manipulative power to medicine, and markedly separated metabolic and cardiovascular physiology, from the nervous system.

The Report was an early attempt to navigate this new world of death before dying by setting standards that could guide medical care using rules chosen for simplicity, reproducibility, and transparency. This framing places the Committee in the context of developments in the management and scrutiny of healthcare over the following half-century that focused less on meanings and morals than on outcomes, accountability, and the properties of medical evidence. Here, too, is a potential alternative historical perspective on how values in healthcare are connected to—if not dependent upon—the management, definition, and use of medical knowledge in practice. The inadequacies of the bioethical project in the case of brain death underscore the importance and complexity of medical facts as carriers of values, and the need for deeper curiosity about the workings of medical knowledge as a source for values. The bioethical critique may have generally gotten the order and dynamic wrong in terms of how values and knowledge relate. The consequences of this misprioritization are significant in terms of what ethicists, practitioners, and the public ought to really worry about, improve, and debate regarding the purposes of medicine. Practices precede ethics. The latter is incomprehensible without the former. This is not stated as an ideological position but as a feature and consequence of working with the body in a powerful kind of effort to heal it. This history starts there, with practice, and with the historical context of the medical knowledge and workings in which the dilemma of brain death surfaced.

OUTLINE

I approached the Report curious as to how it was put together. How did it make sense to those who wrote it? Chapter One outlines the perspectives and experiences that some physicians, such as Beecher, used to develop and articulate their concerns about increasingly intrusive medical practices. Responses to “hopeless” cases and “heroic” treatment in the decades leading up to the Report built upon longstanding concerns within and without medicine over extraordinariness of care, the nature of experiment, and the demands of truth-telling. Beecher inherited and also reshaped that context as he connected facts about the body with the rights of patients. Together, these issues led him to see the necessity of defining brain death. His justification for doing so is described in more detail in Chapter Two, as are the views of his critics. Beecher’s justification is perhaps best explained within the context of his experiences with human experimentation. Ultimately, brain death marked the line that separated acceptable medical care and unacceptable experimentation. For his critics, the salient issues were quite different. But Beecher and his critics were actually joint participants in debates over the scope, uses, and limits of ethics.

Understanding other sections of the Report require revisiting, on the one hand, a long tradition of case law on the timing of death and, on the other, an evolving body of research and related clinical practice with respect to consciousness and coma beginning in the 1920s. Chapter Three focuses on the first issue: the background of case law that was referenced in a section of the Report which addressed the legal standing of the Committee’s efforts. That tour of case law reinforces the uniqueness and impact of death before dying and offers evidence of a broader interest among some legal scholars in new solutions—such as brain death—to address it. Chapters Four and Five discuss the medical records of patients with flat or markedly diminished EEG findings who were seen by Schwab and his EEG lab during his tenure at MGH. These chapters also examine the rapid growth in EEG-based research, which offered a new, though uncertain, medical language for understanding human consciousness.

This material addresses often-criticized ambiguities in the Report: the lack of clarity as to whether it was attempting to define a certain kind of coma or death itself and, relatedly, its lack of a clear conception of life, the end of which was signaled by brain death. Critics of the Report have seen this lack of explicit conceptual grounding as a (suspicious) weakness. However, in revisiting the background of clinical experience and EEG-based research that shaped Schwab’s criteria, such ambiguities can be seen to reflect, instead, a combinatory logic—one that brought together a version of situation ethics that Beecher explicitly endorsed; a consideration of the sorts of patients Schwab and his colleagues faced; the state of knowledge about the neurology of consciousness; and an attempt to reconcile ambiguity through practice standards.

After revisiting the evidence, sources, and experiences that the Report’s authors actually drew upon—material rarely if ever explored among the truckloads of commentary on brain death—the book then looks at events since the Report’s appearance. Chapter Six picks up some of the more provocative themes I began with here. The book closes by thinking about how these themes might draw us to different solutions for taking on the fact–value juggernaut of medicine, especially given its continued trajectory toward a future of neurological manipulation and in light of the expanding domain of neuroscience and cognitive science in explaining people, society, and culture.

The respirator was arguably a first tangible step in bionic therapeutics, and one that profoundly altered the nature of medicine’s manipulative power—a development as far-reaching as other key milestones such as the use of anesthesia. The discomfort and consequences of the emergence of death before dying are still with us. Unnerved by that, ethics critics at the time focused on an apparent divide between alienating medicalization and autonomous conscious choice.

That response may have captured anxiety over medical power but offered limited options for meeting it. Although “neuroethics” appeared in the 1990s to address some of the similar accelerating set of anxieties about brain-based manipulation, it resembles its bioethical namesake too closely, so far, to be other than a distraction—in essence, more of the same. Neuroethics may similarly miss the mark in getting at deeper change to medical practice—particularly in managing costly, technologically intensive, intrusive medicine that can itself be a symptom of a highly consequential ambivalence about embodiment and medical facts that needs to be approached head-on through critical examination of that knowledge, its properties, and sources.

The turn to ethics, the conceptual turn, may have instead diminished the possibilities for a more robust medical humanism with which to help do that. Ethics and its application of moral philosophical tools comes too late to the medical dilemmas it looks to solve. Ethical terms describe what these dilemmas look like, but do not critically explore or explain as well as other options in the medical humanities and social sciences toolkit where and how they originated, or can be comprehensively addressed. History—and anthropology, sociology, epidemiology, psychology, political science—engages that more directly.9

In this history of brain death, medical practice appears as a more complex and potential source for framing norms and values and providing a foundation for its own transformation than it has been given credit for, or that we have learned to effectively use. Medical knowledge describes, predicts, and manipulates biological mechanisms. This inevitably creates tension with the other sources of knowledge and meaning that we use to understand and live our lives. This book, though, questions whether drawing on a distinct form of ethical reasoning or moral philosophy is a right or even empowering response to the dilemmas raised by the decision and often necessity to manage human biology in science-based ways.

So what kind of a fact is death that it should remain open to such ongoing dispute? Brain death is no different from many other medical “facts”—it is as clear, and as vague, as the definition of asthma or high blood pressure. Death shares elements of ongoing uncertainty, contingency, and evolution that are true of most medical “facts.” Ultimately, the value and resilience of such facts lie in how they fit together with other types of experience and in what these facts enable us to do when we use them. But the fact of brain death, as opposed to other facts, became caught up in debates over meaning that were fueled by the centuries-old awkwardness of describing human nature in terms of mind versus body. On the one hand, critics often found that the definition of brain death did not privilege the mind enough, arguing that the “higher” functions of consciousness should be the main criteria for human life and personhood and, consequently, that the loss of the higher functions should allow the declaration of brain death. On the other hand, the definition of brain death was just as often criticized for placing too much emphasis there, and so others argued that conflating life with a cognitive foundation to personhood naively ignored the fundamental biological life of the body. Debates in conferences and journals over how brain death was or wasn’t justified therefore turned on questions of an unanswerable sort, such as: What is the meaning of identity? Questions like this elevated ethical or philosophical expertise about meanings over biological expertise about bodies as the driving consideration in how death should be defined.

How medical facts are established and used has great consequences. But the ethical framing of medical dilemmas, and especially the professionalization and formalization of ethics in healthcare settings, may have been more a symptom of—rather than the right solution for—an underdeveloped capacity for standardizing and brokering effective and affordable medical practices. The use of conceptual, ethical, and moral language about healthcare dilemmas can only go so far as a solution to this failure, and the story of brain death suggests that it did not go very far at all. An appeal, for example, to protect individual autonomy has been used for conservative and liberal political impulses alike, and as a rhetorical flourish to hide entrenched interests, or a genuine recourse to safeguard freedom and choice. That appeal, at the heart of the bioethical project, has had as much mixed cost and benefit in the medical context as it has in the political.

In the end, handwringing over carefully parsed meanings of personhood and autonomy proved clumsy tools to use to reach consensus over brain death in particular, and more generally over issues such as futility, medical necessity, and the aims of medicine. Not surprisingly, public discourse around issues ranging from Terry Schiavo to national healthcare reform descends into a spiral of morally charged but substantively impoverished accusations and finger-pointing about identity, rationing, religion, death panels, or socialism. The United States has the highest cost per citizen for healthcare of any country, but the least value to show for it; the United States also originated bioethics and turned it into an industry—a development whose value-add is also less than clear. The sprawling growth in medical technology and the simultaneous expansion of bioethics is no coincidence. The story of brain death underscores how moralizing the analysis of hard choices might work around, rather than directly address, problems we won’t—or can’t—confront very well.

These are not the conclusions or issues I started with when I began to research the origins of the brain death criteria. I was initially focused on what these pages mostly describe: the circumstances, evidence, and purposes that drove the appearance of brain death in the middle of the twentieth century.

NOTES

1. Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, “A definition of irreversible coma,” Journal of the American Medical Association 205, no. 6 (August 5, 1968): 337–40.

2. I will refer to “medicine,” “medical practice,” etc throughout this book. By “medicine,” I generally mean common usage that describes the organized and applied use of human biological sciences to intervene and alter body functions in validated ways to treat or identify illness, and improve health. The focus of this study—brain death and hospital-based care—means attention is given to physician-professionals and more acute, specialized, care. I fully recognize and encourage broadening that applied use to include a range of actors beyond physicians, as well as to address health promotion goals beyond acute disease. However elastically one wishes to consider the scope of the term “medicine,” the core points made here about sourcing values from medical knowledge still apply, and indeed are crucial to successfully broadening that scope.

3. Eelco F. M. Wijdicks, Panayiotis N. Varelas, Gary S. Gronseth, and David M. Greer, “Evidence-based guideline update: Determining brain death in adults. A Report of the Quality Standards Subcommittee of the American Academy of Neurology,” Neurology 74 (2010): 1911–18; President’s Commission on Ethical Problems in Medicine and Biomedical and Behavioral Research, Defining Death: A Report on the Medical, Legal, and Ethical Issues in the Definition of Death (Washington DC: US Government Printing Office, 1981); President’s Council on Bioethics, Controversies in the Determination of Death (Washington DC: December 2008).

4. Joseph Fletcher, “Technological Devices in Medical Care,” in Who Shall Live? Medicine, Technology, Ethics, ed. Kenneth Vaux (Philadelphia: Fortress Press, 1970), 116–42, 121.

5. Georges Canguilhem, The Normal and the Pathological, Carolyn R. Fawcett (trans) (Brooklyn, NY: Zone Books, 2007 [1964]).

6. Jonathon Moreno, The Body Politic: The Battle over Science in America (New York: Bellevue Literary Press, 2011).

7. Mary Poovey, A History of the Modern Fact: Problems of Knowledge in the Sciences of Wealth and Society (Chicago: University of Chicago Press, 1998), 96.

8. The technocratic role for bioethics in the context of the search for rules, especially around genetic research and interventions, is made in John H. Evans’s Playing God? Human Genetic Engineering and the Rationalization of Public Bioethical Debate (Chicago: University of Chicago Press, 2002).

9. Gary S Belkin, “Toward a historical ethics,” Cambridge Quarterly of Healthcare Ethics, 10 no. 3 (2001): 345–350; Gary S Belkin, Allan M Brandt, “Bioethics: using its historical and social context,” International Anesthesiology Clinics, 39 no. 3 (Summer 2001): 1–11.