The Origins of Bioethics: Remembering When Medicine Went Wrong. John A. Lynch. East Lansing, MI: Michigan State UP, 2019. 228 pages, $39.95 paperback, $39.95 epub. Publisher webpage: https://msupress.org/9781628953800/the-origins-of-bioethics/
Review by Bryna Siegel Finer (she/her)
Dept. of English, Indiana University of Pennsylvania, Indiana PA
Date posted: April 2022
Siegel Finer, Bryna. (2022) “Book review: The Origins of Bioethics: Remembering When Medicine Went Wrong,” Rhetoric of Health & Medicine: Vol. 5 : Iss. 3.
Read below or download here.
As researchers in rhetoric, communications, or many other disciplines that do human subjects research, readers are probably familiar with the Research, Ethics, and Compliance training course provided by the Collaborative Institutional Training Initiative (CITI); the course is the gateway to projects approved by most Institutional Review Boards (IRB). CITI program takers are introduced to and quizzed on the generalities of the Belmont Report, Tuskegee Trials, Nuremberg Code, and others extreme events of medical injustice. John A. Lynch’s recent book (his second of two on bioethics), the Origins of Bioethics: Remembering When Medicine Went Wrong, could easily serve as an enhanced model of the CITI program, going well beyond generalities of the three cases Lynch examines—the Tuskegee syphilis study, the Willowbrook State School hepatitis study, and the University of Cincinnati radiation studies—to give readers an in-depth view of the perils and pitfalls of Human Subjects Research. Importantly, Lynch’s goal is not only to inform or educate readers on the problems of such studies, but also to apply a rhetorical lens to each, to “look at the processes of remembering and forgetting that circulate around [these] bioethical cases that have been memorialized in public” (p. xviii). Lynch frames the studies in the language of “medicine gone wrong,” which allows him to identify the “historical and contemporary wrangle of guilt, blame, and absolution focused on biomedical research” (p. xv).
The book is divided into two parts: Theory and History of Bioethical Memory, and Cases of Bioethical Memory and Minimal Remembrance. The first part contains two chapters that frame the three case studies in the second part. These first two chapters explore the idea of “minimal remembrance”: “the thinning out of the act of witnessing, downplaying the contents of memory to save an institution’s reputation” (p. xviii). According to Lynch, all symbolic and material-rhetorical practices have a “mnestic (or memory-bearing) capacity”; that capacity is found primarily in artifacts of public memory, such as books or photographs (p. 4). Memorials and museums, which Lynch examines in-depth in the following chapters, are “the most prominent memory artifacts” (p. 4). In the first chapter, Lynch weaves together definitions of concepts like public memory, public feeling, affect and emotion,philia (public feeling appealing to an audience), homonia (concord or consensus), the unheimlich (uncanny), and bearing witness in order to come to the idea of minimal remembrance. This idea is used throughout the book, in particular to frame the case studies in the second section.
Chapter 2 provides readers with some history of medical regulation and human subjects research, beginning with the Civil War through to CITI in the modern day. In this chapter, Lynch argues that “three trends shaped the terrain of medical care and medical research in the middle of the twentieth century” (p. 26). Lynch goes on to describe:
… the growth of medicine as a profession shaped by an ethic of benevolent paternalism; the articulation of biopower into usability where all bodies had to contribute to the ends of the state; and the perennial blurring of the lines between experiments and therapy existing in medicine since the time of Hippocrates (p. 26).
This chapter shows how these trends are visible in various biomedical environments, such as the yellow fever experiments in Cuba in the early 1900s; syphilis skin testing in New York, also in the early 1900s; pellagra studies in Mississippi in 1915; the scurvy study in the New York City’s Home for Hebrew Infants in 1921; through to World War II and the Nuremberg trials. Throughout this chronology, Lynch describes the changing landscape of medical ethics and review from Hippocrates through to eventual adoption of CITI training. At the end of the chapter, Lynch questions how these historical events are remembered in the classroom versus publicly, arguing that in both situations, minimal remembrance is displayed in terms of bioethical memory. And so, Lynch turns to an analysis of museums, memorials, and other artifacts in the three case studies that follow. At this point, readers will “see the interaction of the identities, affective investments, and other priorities of medical professionals and other groups play out in public instances of bioethical memory” (p. 40).
While the first two chapters alone would suffice to provide an education in bioethical wrongdoing well-beyond the CITI course, the meat of the book is in the case studies of Tuskegee, Willowbrook, and University of Cincinnati, a chapter provided for each case. I will, for a moment, skip to chapter 4, where Lynch provides an analysis of the differences between memorials and monuments, as I find this information helpfulfor understanding all three case studies. Monuments are typically built to represent a victory, whereas a memorial is meant to focus attention on those who risked their lives in a specific event. Lynch explains, “monumental history and memory focus on heroes and heroic accomplishments” (p. 85); “memorials are often pedagogical, providing details about the historical past as well as the moral lessons that one should draw from it” (p. 86). To Lynch, monumental history is problematic: “the rhetorical form of the monument encourages minimal remembrance, a recognition that a past event happened, while forgetting the causes and conditions that led to the event being remembered” (p. 86).
Chapter 3 dedicates several pages to the historical narrative of the United States Public Health Service Tuskegee Syphilis Study, in which researchers from the U.S. Public Health Service ran observations of black men with syphilis; the men were given experimental treatments such as spinal taps and iron tonics but prevented from obtaining life-saving treatment with penicillin (p. 43). Lynch then begins a rhetorical reading of the Tuskegee History Center and the Legacy Museum, arguing that these two places “offer distinct and competing visions of the Tuskegee Syphilis Study” (p. 44). Lynch analyzes the study overall under “three broad configurations of memory,” which include medical research, race and racism, and institutional shame (p. 45) before turning to the Tuskegee History Center. His rhetorical reading of the Center uncovers three themes: multiculturalism, education, and medical racism (p. 56). In this section, Lynch carefully analyzes the displays and exhibits, the layout of the Center and exhibit spaces, and the panels describing the exhibits. Lynch includes pictures taken from his own visits to Tuskegee, adding validity to his study (pictures throughout the book are credited to the author, who clearly spent a lot of time at all of the sites). The chapter ends by describing how both sites combined provide a “‘memory agon,’ where tension and conflict between specific partial memories lead to richer, more nuanced experiences and understandings of memory and history by visitors” (p. 77).
Lynch begins Chapter 4 with the familiar example of Geraldo Rivera’s 1972 exposé of the Willowbrook State School for the developmentally disabled; Rivera observed extreme instances of filth, including young naked children smeared in feces and widespread disease. Researchers at Willowbrook studied hepatitis by feeding the children chocolate milk that contained hepatitis-infected feces (p. 83). Yet Lynch reminds readers that even as far back as its opening in 1951, “scandal had surrounded Willowbrook …[because] it was overcrowded, understaffed, and a breeding ground for measles, shigella, and hepatitis,” conditions that were reported in local newspapers repeatedly (p. 80). In this chapter, Lynch differentiates between “official public memory,” which includes a monument to the school that provides minimal remembrance, and “vernacular public memory,” which “highlights the horrible conditions at the school and the neglect that enabled it in order reinforce public commitment to supporting care for the developmentally disabled” (p. 81). In this chapter, the differences between monument and memorial become more important as readers are introduced to two monuments on the former Willowbrook campus, a traveling exhibit, and two documentary films. The commemorative plaque that serves as a minimal remembrance to those who lived and worked at Willowbrook is unironically placed in an area that is inaccessible to those with mobility issues (p. 88). Lynch also analyzes a monument to one of the buildings that existed at Willowbrook before it was refurbished for use by the College of Staten Island. Three effects of these monuments are notable and thoroughly analyzed in the book: both monuments “position some individual or group as the hero,” (p. 89), “obscure the abject conditions of Willowbrook’s residents,” (p. 90), and “foreclose the middle voice that facilitates memory and erases material traces of Willowbrook” (p. 91). In piecing together the history of remembrance and forgetting of what happened there using artifacts like the monuments and documentary films, Lynch notes, “Willowbrook appears alongside Tuskegee in bioethics training as unethical research that violates tenets of autonomy, beneficence, and justice” (p. 80). Lynch ends the chapter hopefully, describing a new monument that is meant to be constructed there and will perhaps “lead to less minimal remembrance,” as it was originally planned to reference the horrific research experiments that occurred there (p. 115).
Chapter 5 focuses on the University of Cincinnati Whole Body Radiation Studies (WBS), where a research team contracted by the Department of Defense exposed patients suffering from metastatic cancers to excessive amounts of radiation without providing nausea medication or treatment for depletion of white and red blood cells (p. 117). In this chapter, Lynch explores the idea of “meaningful forgetting”: “where the capacity to create and sustain public and bioethical memories of the event has been undermined” (p. 118). News stories and other artifacts allow Lynch to weave together the history of the study in which readers see attempts to suppress the story of what really happened, in part led by the researchers who paint themselves as victims. Lynch provides a rhetorical reading of the memorial to the research subjects using lenses of place, public memory, and mnemomicide. Lynch concludes in this chapter that despite the availability of public discourse, particularly on this study, public memory and public discourse about an event are dependent on “instantiation in discourses that are actively circulated over long periods of time or instantiation in places through which people circulate” (p. 146). Because the plaque is basically hidden on campus and because its content only vaguely refers to what really happened to the victims, the outcome is “ethically troubling” and works “to suppress the circulation of narratives about the WBS study” (p. 147).
Atypically for an “academic” book, I was drawn into the narrative of this book to the point that I really could not put it down. While its sophistication and arguments ensure that it is far from an exposé, it’s hard not to get wrapped up in the retelling of these stories. Lynch is painstakingly detailed in his accounts of what happened in Tuskegee, Willowbrook, and Cincinnati, uncovering and putting together information that one simply does not get in the typical ethics lessons of the CITI program or others like it. As the field makes more explicit its attention to ethics (see Vol. 3.4 special section of the Rhetoric of Health and Medicine journal), and social justice (see social justice statement, “Response to Racial Injustice” by RHM journal editors in June 2020), Lynch’s book is necessary reading. From this book, readers will gain the following: the details of these medical tragedies; important lessons in biomedical ethics; and strategies for how to rhetorically read the vernacular past of events that have shaped medical history. Perhaps the biggest lesson of this book – the exception, of course, being the ethical lessons – is that its case studies serve as examples of how to apply an RHM lens to specific events, particularly injustices, that have led us to our current time in medical history. Lynch teaches readers how to construct a rhetorical memory of an event using multiple kinds of artifacts and multiple rhetorical frames. Well-deserving of the Association for the Rhetoric of Science, Technology, and Medicine Book Award, which it won in 2020, Lynch’s book should be read by anyone interested in bioethics, the history of medical (mis)justice, and the rhetoric of health, medicine, and public memory.
Notes on contributor
Bryna Siegel Finer, PhD, is Professor of English and Director of Liberal Studies English and Writing Across the Curriculum at Indiana University of Pennsylvania.