The Origins of Bioethics: Remembering When Medicine Went Wrong

by John A. Lynch

Overview

The Origins of Bioethics argues that what we remember from the history of medicine and how we remember it are consequential for the identities of doctors, researchers, and patients in the present day. Remembering when medicine went wrong calls people to account for the injustices inflicted on vulnerable communities across the twentieth century in the name of medicine, but the very groups empowered to create memorials to these events often have a vested interest in minimizing their culpability for them. Sometimes these groups bury this past and forget events when medical research harmed those it was supposed to help. The call to bioethical memory then conflicts with a desire for “minimal remembrance” on the part of institutions and governments. The Origins of Bioethics charts this tension between bioethical memory and minimal remembrance across three cases—the Tuskegee Syphilis Study, the Willowbrook Hepatitis Study, and the Cincinnati Whole Body Radiation Study—that highlight the shift from robust bioethical memory to minimal remembrance to forgetting.

Product Details

ISBN-13:	9781611863413
Publisher:	Michigan State University Press
Publication date:	09/01/2019
Series:	Rhetoric & Public Affairs
Edition description:	1
Pages:	246
Product dimensions:	6.00(w) x 9.00(h) x 0.70(d)

About the Author

John A. Lynch is Professor and Graduate Director in the Department of Communication at the University of Cincinnati. He was previously the clinical research ethicist at the Center for Clinical and Translational Science and Training at UC’s College of Medicine. He is the author of What Are Stem Cells? Definitions at the Intersection of Science and Politics, which received the 2016 Distinguished Book Award from the National Communication Association’s Health Communication Division, and “‘Prepare to Believe’: The Creation Museum as Embodied Conversion Narrative,” which received the Association for the Rhetoric of Science, Technology, and Medicine’s 2014 Article of the Year Award. 

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CHAPTER 1

Bioethical Memory and Minimal Remembrance

In the first two-thirds of the twentieth century, medical researchers were professionalized to believe that their individual judgments were sufficient to determine the most beneficial, least harmful course for those in their clinical care and in their medical research. In offering medical care and conducting medical research, they were guided by demands that all bodies should be useful for the polity, even the bodies of the ill and the developmentally disabled. Views about medical ethics and usability changed, which led medical ethicists and the general public to decry some of the research being conducted in the United States. Historically, some of those events became the impetus for changing how medical research occurred in the United States and across the globe. Those events are now recalled in numerous settings. Yet a tension exists between the demand to remember and equally salient demands on the state and many institutions to preserve their reputation and image, which would be harmed by the recollections of medical histories. Here I draw from literature in rhetoric, public memory, and bioethics to outline the concepts of bioethical memory and minimal remembrance.

Bioethical Memory

The concept of bioethical memory builds on existing work on public memory in rhetorical studies. Public memory, as Carol Blair, Greg Dickinson, and Brian Ott argue, is "an activity of collectivity rather than (or in addition to) individuated, cognitive work ... [that is] activated by present concerns, issues, or anxieties." Thomas Dunn argues, "Within the frame of public memory, the past operates not as historical fact but as historical interpretation for the purposes of making public argument. Through framing the past, we serve a present need." These definitions emphasize the mnestic (or memory-bearing) capacity of all symbolic- and material-rhetorical practices. This mnestic capacity of all rhetoric is reflected in the range of artifacts that have been identified as examples of public memory, including books, speeches, photographs, television, and movies; but the most prominent memory artifacts are often memorials and museums. These projects highlight how memories are partial and often contested. Any single memory is limited and only able to encapsulate part of the past, typically those parts the display of which would benefit the people crafting the memory or reflect the dominant values of the broader culture.

While it draws on these general qualities of public memory, bioethical public memory mobilizes the mnestic capacities of rhetoric in order to bear witness to the past. According to Barbie Zelizer, bearing witness means to "assume responsibility for the events of our times. ... Bearing witness constitutes a specific form of collective remembering that interprets an event as significant and deserving of critical attention." The critical attention that comes from witnessing requires individuals "to understand and verbalize the lessons of injustice and tragedy" and also to act on those lessons. For Zelizer, bearing witness combines historical truth-telling and interpretation: We make an argument in the present for why collective witnessing of the past is crucial to our values and identities in the present day. This leaves open space for contestation and disagreement, but this does not undermine witnessing. As Zelizer argues, "bearing witness implies that there is no best way of depicting or thinking about atrocities, but that the very fact of paying heed collectively is crucial." Bioethicist and narrative medicine scholar Arthur Frank argues that bioethics, especially a bioethics defined by a narrative focus, has a duty to "witness suffering." To further develop the concept of bioethical memory, we must consider how the act of bearing witness modifies how identity and emotion, as well as materiality and symbolicity, operate in public memory.

IDENTITY AND EMOTION

Two key qualities of public memory are their role in creating shared identities and the mobilization of public feeling to secure adherence to the identities provided. Blair and colleagues emphasize identity as a key outcome of public memory. For them, public memory narrates "a common identity, a construction that forwards an at least momentarily definitive articulation of the group." The partiality of memory and the resultant competition make public memory a nexus "where a host of rhetors and audiences are involved in the performative process of individual and collective identity." Public memory "is always there to be invoked," to reassure us about our national, regional, or professional identities. It also plays a key role in our senses of race and gender, sharpening the identities offered by those categories as well. It also configures the relationship that collective identity has to the past, especially the responsibility or culpability those constituted by that identity must assume.

Memory offers us narratives that shape collective identities, but those narratives qua narrative do not guarantee that collectives will adhere to the identities offered in those narratives. "It is not enough, for example to say that those vehicles of memory are narratives or rituals or relics," Blair and colleagues note, "because some narratives, rituals, and relics secure more collective attachment than others." One of the most important qualities of public memory that secures collective support for narratives is the animation of that memory by public feeling. In using the language of "public feeling," I am following Debra Hawhee and Jenell Johnson in preferring the term over the more common conceptual dichotomy of affect and emotion.

Following Brian Massumi, rhetorical scholars often argue for the difference between affect, framed as nonconscious intensities, and emotion, which is the articulation of that affective intensity within systems of meaning. Hawhee argues that discussions of affect and emotion in rhetorical scholarship tend to stop at "rehearsing the accepted division between emotion and affect as known and inchoate respectively." Johnson argues that "feeling" better addresses "the complex relationship between bodily intensity, the perception of that intensity, and its translation into language," especially in historical analyses where "we only have access to the feelings of the past through their recorded expression — the same textual traces that tell us a public was here." The uncertainty and ephemerality implied by the term "feeling" is especially appropriate for attempts to assess memories of events that evoked the morass of feelings that many associated with medical research tried (often successfully) to repress.

Specifically, feeling animates the narratives of public memory, facilitating adherence to the details of the events described and the identities or subject positions offered to the audiences of the narrative. Following Sarah Ahmed, we can ask, "what sticks?" in the narratives of events where medicine went wrong. Blair and colleagues identify two levels at which public feeling operates: They "suggest that what Aristotle called philia, and what we might label affiliation, is, by definition, the principal affective modality of public memory." This collective sense of belonging, as well as the individual's own degree of attachment to that collective, is facilitated by many things, including other public feelings "like pride, contempt, anxiety, anger, horror, shame, guilt, confidence, gratitude, or compassion ... [that] contribute to the production and maintenance of affiliation in more or less direct ways, in various configurations, and with various investments."

Yet, public feelings, especially philia, need further elaboration. Blair and colleagues ground their perspective on philia in Aristotle's Rhetoric, but as Eugene Garver notes, Aristotle's definition of the passions in the Rhetoric, among which he includes philia, differs somewhat from his discussion elsewhere. Philia is also a topic in the Politics and the Nichomachean Ethics. In the Rhetoric, philia is a public feeling used in appealing to one's audience (1380b34–1381a10), but elsewhere Aristotle offers a more expansive definition of it as "some sort of excellence or virtue, or involves virtue, and it is, moreover, most indispensable for life" (1155a4–5). As Eleni Leontsini argues, philia (or civic friendship) "is important because it contributes to the unity of both the state and community by transmitting feelings of intimacy and solidarity." These feelings of intimacy and solidarity are a necessary component of ethics and justice, a point first made by Aristotle and reinforced by contemporary commentary on his work.

An additional quality of philia not raised by the Rhetoric is the role of homonoia, translated as concord or consensus, which is the condition "when the citizens have the same judgment about their common interest, when they choose the same things, and when they execute what they have decided in common" (Aristotle, Nichomachean Ethics, 1167a25–29). Garver describes it as "more a matter of knowing how than knowing that." Concord is an essential component of philia: In order to have feelings of intimacy and solidarity, it is necessary to have some core around which that intimacy and solidarity develops. In other words, homonoia or concord is the Aristotelian way of emphasizing the identity that is at the heart of public memory. Further, the classical discussion of philia and homonoia underscores the fundamental unity of identity and emotion in public memory scholarship. People become invested in the identities offered by public memory because of the sense of philia or affiliation with that memory and its attendant identity. To have philia or affiliation is to already have an identification with a group and a set of ideals associated with them.

In bioethical memory, one assumes the identity of witness, joining a collective that agrees an event is deserving of critical attention. That affiliation with other witnesses to bioethical events is enabled in various ways by feelings ranging from pride to horror to shame to compassion. This philia is one among many affiliations or identities any individual witness will possess, and the character of one's bearing witness will be inflected by the other roles one inhabits, like doctor or patient. Medical doctors affiliate among themselves, creating a community that identifies broadly with the institution of medicine and defends it against attacks from outsiders. They invest in an identity framed by benevolent exercise of medical knowledge. Yet, this community of doctors — a collective sharing of an identity that sticks as a result of affiliation/philia made possible or facilitated by years of clinical training — exists in relationship to others. This is reflected synecdochically in the Hippocratic Oath, where the relationships of doctors to patients are articulated. This relationship is a key quality of the philia of many bioethical memories: We are called to bear witness to how this relationship sometimes goes astray, and to account for the psychic distress it causes patients and communities, as well as the medical doctors. This distress is reflected in other public feelings that can complicate philia. As Garver notes, "we judge the actions of others differently when colored by shame, benevolence, pity, or envy." Three emotions are noteworthy for bioethical memory: disgust, anger, and the unheimlich.

Medical science involves bodies in various forms of distress — sickened, sometimes bedridden, occasionally filthy, and too frequently in pain. Many reactions are possible, but a common one would be disgust. As Sara Ahmed notes, disgust is often aroused by perceptions of filth or dirtiness and nakedness. The articulation of disgust moves through three moments. First, one experiences an initial reaction of pulling away, that what initiated the response "threatens to stick to us." Second, one makes that disgust apparent through facial and bodily comportment or a verbal declaration (e.g., "That's disgusting!"). Third, one distances oneself from the object or individuals to whom disgust adheres: Ahmed describes this third step as the move to declare, "'They are disgusting,' which translates into, 'We are disgusted by them.'" This is one potential reaction to bodies, especially those bodies that have been neglected or abused by those who should otherwise care for them. Problematic medical research elicits expressions of horror and outrage, which are the translation of disgust into rhetorical distance from that research. This processing of disgust and horror thus facilitates philia: we witnesses are united in our disgust. Yet, the affective economy of disgust is problematic. In its move to distance the shared subject that feels disgust from the Other or object to which disgustingness gets attributed, "disgust might not allow one to get close enough to an object before one is compelled to pull away." Disgust creates a collective identity that, in their rejection of the disgusting thing, might improve conditions for those harmed (e.g., "We must close down this disgusting institution!" or "We must stop this type of disgusting research!"). Yet, disgust simultaneously has the capacity to foreclose further engagement with the issue: Instead of being disgusted at the conditions in which people have been placed, we might reject the people, doubling the harms they experience.

Disgust can be a powerful motivator, and its capacity to affect those bearing witness is complemented by anger. Ahmed argues that anger can arise in response to witnessing pain, and I believe it can also occur in response to disgusting situations. Anger can be unproductive — "there are moments of anger where it is unclear what one is angry about" — and can be used as a defense against legitimate (bio)ethical claims about injustice; but anger can also contribute to progressive missions of social justice. Ahmed draws on feminist and black feminist scholarship to outline anger's productive ethical capacity. According to Ahmed, "Crucially, anger is not simply defined in relationship to a past, but as opening up the future. ... Being against something is also being for something, but something that has yet to be articulated or is not yet." Here, anger is a response to past injustice that becomes the motivating force that both informs and drives those who feel it toward a better future. This type of anger that motivates witnesses to remedy past actions is a productive and ethical emotion.

Another key public feeling is the uncanny. According to Michael Hyde, the sense of the uncanny (the unheimlich) strips away our sense of familiarity with our world and our routines. In the experience of the uncanny and the anxiety it produces, Hyde notes, "No psychological distance exists between our 'selves' and what this emotion reveals." The immediacy of the uncanny calls into question our ability to navigate our lives; in other words, the know-how that helps constitute homonoia/concord becomes disturbed. Unlike disgust and anger, which create distance between the self and other, the uncanny does not allow the creation of psychological distance to separate us from the source of our anxiety and loss. Rather than action directed outward at conditions, people, or events we find problematic, the unheimlich directs the person's attention inward toward self-reflection. In this way, the unheimlich can be ethically transformative, as individuals assess their identities, affiliations, and actions and change them in response to that unheimlich-driven reflection. Clearly, this capacity would be valuable for bioethics: Encouraging clinicians and researchers to reflect on their actions, how they impact patients and research subjects, and then change those behaviors is a laudable goal for bioethics. Yet, the unheimlich, like anger and disgust, can have ethically problematic impacts. In his study of the suburbs, Greg Dickinson notes that suburban life is driven by a sense of unheimlich. The uncanny produces nostalgia, which leads people to pursue "never-existing objects" — times, places, and modes of life that never existed outside of collective fantasy — through destructive consumerist practices. Similarly, when faced with the unheimlich, medical practitioners and researchers might reject that experience. During their training, health-care providers, especially medical doctors, have been trained to practice "clinical detachment" or "detached concern," where they constrain their own emotional responses in order to provide competent medical care. An individual might reject the uncanny as creating doubt and uncertainty, undermining the ability to provide competent care. Such a reaction is possible when the unheimlich balances those who experience it on the knife edge between ethical self-reflection described by Hyde and the nostalgia and melancholic search for an object that never was that Dickinson described.

(Continues…)

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Excerpted from "The Origins of Bioethics"
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Copyright © 2019 John A. Lynch.
Excerpted by permission of Michigan State University Press.
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Table of Contents

Acknowledgments vii

Introduction xi

Part 1 Theory and History of Bioethical Memory

Chapter 1 Bioethical Memory and Minimal Remembrance 3

Chapter 2 Experiment or Treatment? Histories of Medical Care, Research, and Regulation 25

Part 2 Cases of Bioethical Memory and Minimal Remembrance

Chapter 3 Lawsuits and Legacies: Competing Memorializations of the Tuskegee Syphilis Study 43

Chapter 4 Minimal Remembrance and the Obligation to Remember: Official and Vernacular Memories of the Willowbrook State School 79

Chapter 5 Attempting to Forget: The University of Cincinnati Radiation Studies 117

Conclusion 149

Notes 165

References 207

Index 221

Editorial Reviews

"This is a remarkable and engaging book. John A. Lynch is a master at using scholarship in communication and rhetoric to shine a light on bioethics topics and issues. This book is a perfect demonstration of that strategy. Written in clear and engaging prose, it invites readers to reflect on the conflicting interests that continue to shape how stories of research misconduct are told and memorialized. Bioethicists will especially appreciate Lynch’s invitation to reexamine the role bioethicists play in keeping these stories alive in public memory."
—Kyle Brothers, Endowed Chair in Pediatric Clinical and Translational Research, University of Louisville School of Medicine


"Working across apparently disparate terrain of medical rhetoric and rhetorical studies of memory places, John A. Lynch makes a powerful argument that memory undergirds contemporary public debates about bioethics. Lynch carefully theorizes public feelings like disgust, anger, and the uncanny while tracing useful distinctions between minimal memory and forgetting. The heart of the book is his compelling critical assessments of memory practices regarding moments when “'medicine went wrong.'”
—Greg Dickinson, Professor and Chair, Department of Communication Studies, Colorado State University, and author of Suburban Dreams: Imagining and Building the Good Life
 


"The Origins of Bioethics offers original contributions to both humanistic studies of medical science and interdisciplinary studies of public memory—an impressive scholarly feat indeed. The author’s depth of research, dexterous analyses, and learned insights ensure that this book will appeal to a variety of readers both within rhetorical studies and across related disciplines."
—Bradford Vivian, Professor of Communication Arts and Sciences, Pennsylvania State University, and author of Commonplace Witnessing: Rhetorical Invention, Historical Remembrance, and Public Culture
 

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