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Saving Babies?
The Consequences of Newborn Genetic Screening
Stefan Timmermans and Mara Buchbinder
University of Chicago Press, 2012
It has been close to six decades since Watson and Crick discovered the structure of DNA and more than ten years since the human genome was decoded. Today, through the collection and analysis of a small blood sample, every baby born in the United States is screened for more than fifty genetic disorders. Though the early detection of these abnormalities can potentially save lives, the test also has a high percentage of false positives—inaccurate results that can take a brutal emotional toll on parents before they are corrected. Now some doctors are questioning whether the benefits of these screenings outweigh the stress and pain they sometimes produce. In Saving Babies?, Stefan Timmermans and Mara Buchbinder evaluate the consequences and benefits of state-mandated newborn screening—and the larger policy questions they raise about the inherent inequalities in American medical care that limit the effectiveness of this potentially lifesaving technology.
 
Drawing on observations and interviews with families, doctors, and policy actors, Timmermans and Buchbinder have given us the first ethnographic study of how parents and geneticists resolve the many uncertainties in screening newborns. Ideal for scholars of medicine, public health, and public policy, this book is destined to become a classic in its field.
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Selling Science
Polio and the Promise of Gamma Globulin
Mawdsley, Stephen E
Rutgers University Press, 2016
Today, when many parents seem reluctant to have their children vaccinated, even with long proven medications, the Salk vaccine trial, which enrolled millions of healthy children to test an unproven medical intervention, seems nothing short of astonishing. In Selling Science, medical historian Stephen E. Mawdsley recounts the untold story of the first large clinical trial to control polio using healthy children—55,000 healthy children—revealing how this long-forgotten incident cleared the path for Salk’s later trial.
 
Mawdsley describes how, in the early 1950s, Dr. William Hammon and the National Foundation for Infantile Paralysis launched a pioneering medical experiment on a previously untried scale. Conducted on over 55,000 healthy children in Texas, Utah, Iowa, and Nebraska, this landmark study assessed the safety and effectiveness of a blood component, gamma globulin, to prevent paralytic polio. The value of the proposed experiment was questioned by many prominent health professionals as it harbored potential health risks, but as Mawdsley points out, compromise and coercion moved it forward. And though the trial returned dubious results, it was presented to the public as a triumph and used to justify a federally sanctioned mass immunization study on thousands of families between 1953 and 1954. Indeed, the concept, conduct, and outcome of the GG study were sold to health professionals, medical researchers, and the public at each stage. At a time when most Americans trusted scientists, their mutual encounter under the auspices of conquering disease was shaped by politics, marketing, and at times, deception.

Drawing on oral history interviews, medical journals, newspapers, meeting minutes, and private institutional records, Selling Science sheds light on the ethics of scientific conduct, and on the power of marketing to shape public opinion about medical experimentation.
 
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Sex, Sickness, and Slavery
Illness in the Antebellum South
Marli F. Weiner with Mazie Hough
University of Illinois Press, 2014
Marli F. Wiener skillfully integrates the history of medicine with social and intellectual history in this study of how race and sex complicated medical treatment in the antebellum South. Sex, Sickness, and Slavery argues that Southern physicians' scientific training and practice uniquely entitled them to formulate medical justification for the imbalanced racial hierarchies of the period. Challenged with both helping to preserve the slave system (by acknowledging and preserving clear distinctions of race and sex) and enhancing their own authority (with correct medical diagnoses and effective treatment), doctors sought to understand bodies that did not necessarily fit into neat dichotomies or agree with suggested treatments. 
 
Focusing on Southern states from Virginia to Alabama, Weiner examines medical and lay perspectives on the body through a range of sources, including medical journals, notes, diaries, daybooks, and letters. These personal and revealing sources show how physicians, medical students, and patients--both free whites and slaves--felt about vulnerability to disease and mental illnesses, how bodily differences between races and sexes were explained, and how emotions, common sense, working conditions, and climate were understood to have an effect on the body.
 
Physicians' authority did not go uncontested, however. Weiner also describes the ways in which laypeople, both black and white, resisted medical authority, clearly refusing to cede explanatory power to doctors without measuring medical views against their own bodily experiences or personal beliefs. Expertly drawing the dynamic tensions during this period in which Southern culture and the demands of slavery often trumped science, Weiner explores how doctors struggled with contradictions as medicine became a key arena for debate over the meanings of male and female, sick and well, black and white, North and South.
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Shadows in the Valley
A Cultural History of Illness, Death, and Loss in New England, 1840-1916
Alan Swedlund
University of Massachusetts Press, 2009
How does the experience of sickness, death, and loss change over time? We know that the incidence and virulence of particular diseases have varied from one period to another, as has their medical treatment. But what was it like for the individuals who suffered and died from those illnesses, for the health practitioners and institutions that attended to them, and for the families who buried and mourned them?

In Shadows in the Valley, Alan Swedlund addresses these questions by closely examining the history of mortality in several small communities in western Massachusetts from the mid-nineteenth to the early twentieth century—from just before the acceptance of the germ theory of disease through the early days of public health reform in the United States. This was a time when most Americans lived in rural areas or small towns rather than large cities. It was also a time when a wide range of healing practices was available to the American public, and when the modern form of Western medicine was striving for dominance and authority. As Swedlund shows, this juncture of competing practices and ideologies provides a rich opportunity for exploring the rise of modern medicine and its impact on the everyday lives of ordinary Americans.

To indicate how individuals in different stages of their lives were exposed to varying assaults on their health, the book is structured in a way that superimposes what the author calls "life-course time" onto chronological time. Thus the early chapters look at issues of infancy and childhood in the 1840s and 1850s and the last chapters at the problems of old age after 1900. The reader becomes familiar with specific individuals and families as they cope with the recurrent loss of children, struggle to understand the causes of new contagions, and seek to find meaning in untimely death. By using a broad time frame and a narrow geographical lens, Swedlund is able to engage with both the particularities and generalities of evolving medical knowledge and changing practice, and to highlight the differences in personal as well as collective responses to illness and loss.
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Silent Violence
Global Health, Malaria, and Child Survival in Tanzania
Vinay R. Kamat
University of Arizona Press, 2013
Silent Violence engages the harsh reality of malaria and its effects on marginalized communities in Tanzania. Vinay R. Kamat presents an ethnographic analysis of the shifting global discourses and practices surrounding malaria control and their impact on the people of Tanzania, especially mothers of children sickened by malaria.

Malaria control, according to Kamat, has become increasingly medicalized, a trend that overemphasizes biomedical and pharmaceutical interventions while neglecting the social, political, and economic conditions he maintains are central to Africa’s malaria problem. Kamat offers recent findings on global health governance, neoliberal economic and health policies, and their impact on local communities.

Seeking to link wider social, economic, and political forces to local experiences of sickness and suffering, Kamat analyzes the lived experiences and practices of people most seriously affected by malaria—infants and children. The persistence of childhood malaria is a form of structural violence, he contends, and the resultant social suffering in poor communities is closely tied to social inequalities.

Silent Violence illustrates the evolving nature of local responses to the global discourse on malaria control. It advocates for the close study of disease treatment in poor communities as an integral component of global health funding. This ethnography combines a decade of fieldwork with critical review and a rare anthropological perspective on the limitations of the bureaucratic, technological, institutional, medical, and political practices that currently determine malaria interventions in Africa.
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Starved for Light
The Long Shadow of Rickets and Vitamin D Deficiency
Christian Warren
University of Chicago Press
A wide-ranging history of rickets tracks the disease’s emergence, evolution, and eventual treatment—and exposes the backstory behind contemporary worries about vitamin D deficiency.
 
Rickets, a childhood disorder that causes soft and misshapen bones, transformed from an ancient but infrequent threat to a common scourge during the Industrial Revolution. Factories, mills, and urban growth transformed the landscape. Malnutrition and insufficient exposure to sunlight led to severe cases of rickets across Europe and the United States, affecting children in a variety of settings: dim British cities and American slave labor camps, moneyed households and impoverished ones. By the late 1800s, it was one of the most common pediatric diseases, seemingly an intractable consequence of modern life.
 
Starved for Light offers the first comprehensive history of this disorder. Tracing the efforts to understand, prevent, and treat rickets—first with the traditional remedy of cod liver oil, then with the application of a breakthrough corrective, industrially-produced vitamin D supplements—Christian Warren places the disease at the center of a riveting medical history, one alert to the ways society shapes our views on illness. Warren shows how physicians and public health advocates in the United States turned their attention to rickets among urban immigrants, both African Americans and southern Europeans; some concluded that the disease was linked to race, while others blamed poverty, sunless buildings and cities, or cultural preferences in diet and clothing. Spotlighting rickets’ role in a series of medical developments, Warren leads readers through the encroachment on midwifery by male obstetricians, the development of pediatric orthopedic devices and surgeries, early twentieth-century research into vitamin D, appalling clinical experiments on young children testing its potential, and the eventual commercialization of all manner of vitamin D supplements. As vitamin D consumption rose in the mid-twentieth century, rickets—previously a major concern for doctors, parents, and public health institutions—faded in its severity, frequency, and as a topic of discussion. But despite the availability of drugstore supplements and fortified milk, small numbers of cases still appear today, and concerns and controversies about vitamin D deficiency in general continue to grow.
 
Sweeping and engaging, Starved for Light illuminates the social conditions underpinning our cures and our choices, helping us to see history’s echoes in contemporary prescriptions.
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Stigma Stories
Rhetoric, Lived Experience, and Chronic Illness
Molly Margaret Kessler
The Ohio State University Press, 2022
In Stigma Stories: Rhetoric, Lived Experience, and Chronic Illness, Molly Margaret Kessler focuses on ostomies and gastrointestinal conditions to show how stigma is nearly as central to living with chronic conditions as the conditions themselves. Drawing on a multi-year study that includes participant observations, interviews, and rhetorical engagement with public health campaigns, blogs, social media posts, and news articles, Stigma Stories advocates for a rhetorical praxiographic approach that is attuned to the rhetorical processes, experiences, and practices in which stigma is enacted or countered.

Engaging interdisciplinary conversations from the rhetoric of health and medicine, disability studies, narrative medicine, and sociology, Kessler takes an innovative look at how stigma functions on individual, interpersonal, and societal levels. In doing so, Kessler reveals how  stories and lived experiences have much to teach us not only about how stigma functions but also about how it can be dismantled.

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A Strong and Steady Pulse
Stories from a Cardiologist
Gregory D. Chapman, MD
University of Alabama Press, 2021
A seasoned cardiologist shares his experiences, opinions, and recommendations about heart disease and other cardiac problems

A Strong and Steady Pulse: Stories from a Cardiologist provides an insider’s perspective on the field of cardiovascular medicine told through vignettes and insights drawn from Gregory D. Chapman’s three decades as a cardiologist and professor of medicine. In twenty-six bite-sized chapters based on real-life patients and experiences, Chapman provides an overview of contemporary cardiovascular diseases and treatments, illuminating the art and science of medical practice for lay audiences and professionals alike.

With A Strong and Steady Pulse, Chapman provides medical students and general readers with a better understanding of cardiac disease and its contributing factors in modern life, and he also provides insights on the diagnostic process, medical decision making, and patient care. Each chapter presents a patient and their initial appearance, described in clear detail as Chapman gently walks us through his evaluation and the steps he and his associates take to determine the underlying problem. Chapman’s stories are about real people dealing with life and death situations—including the physicians, nurses, medical students, and other team members who try to save lives in emergent, confusing conditions.

The sometimes hard-won solutions to these medical challenges combine new technology and cutting-edge research together with insights drawn from Chapman’s past experiences as an intern and resident in Manhattan during the AIDS epidemic, as a postdoctoral fellow at Duke University in the 1990s, and in practice in Nashville, Tennessee, and Birmingham, Alabama. Conditions addressed include the recognition and management of heart attack, heart failure, arrhythmia, valvular heart disease, cardiac transplantation, broken heart syndrome, hypertension, and the depression some people experience after a heart attack, as well as related topics like statin drugs, the Apple Watch ECG feature, and oral anticoagulants. Finally, the emergence of the COVID-19 virus and its disruption of normal hospital routines as the pandemic unfolded is addressed in an epilogue.

 
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Structural Intimacies
Sexual Stories in the Black AIDS Epidemic
Mackenzie, Sonja
Rutgers University Press, 2013
One of the most relevant social problems in contemporary American life is the continuing HIV epidemic in the Black population. With vivid ethnographic detail, this book brings together scholarship on the structural dimensions of the AIDS epidemic and the social construction of sexuality to assert that shifting forms of sexual stories—structural intimacies—are emerging, produced by the meeting of intimate lives and social structural patterns. These stories render such inequalities as racism, poverty, gender power disparities, sexual stigma, and discrimination as central not just to the dramatic, disproportionate spread of HIV in Black communities in the United States, but to the formation of Black sexualities.

Sonja Mackenzie elegantly argues that structural vulnerability is felt—quite literally—in the blood, in the possibilities and constraints on sexual lives, and in the rhetorics of their telling. The circulation of structural intimacies in daily life and in the political domain reflects possibilities for seeking what Mackenzie calls intimate justice at the nexus of cultural, economic, political, and moral spheres. Structural Intimacies presents a compelling case: in an era of deepening medicalization of HIV/AIDS, public health must move beyond individual-level interventions to community-level health equity frames and policy changes
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Sugar and Tension
Diabetes and Gender in Modern India
Weaver, Lesley Jo
Rutgers University Press, 2019
Women in North India are socialized to care for others, so what do they do when they get a disease like diabetes that requires intensive self-care? In Sugar and Tension, Lesley Jo Weaver uses women’s experiences with diabetes in New Delhi as a lens to explore how gendered roles and expectations are taking shape in contemporary India. Weaver argues that although women’s domestic care of others may be at odds with the self-care mandates of biomedically-managed diabetes, these roles nevertheless do important cultural work that may buffer women’s mental and physical health by fostering social belonging. Weaver describes how women negotiate the many responsibilities in their lives when chronic disease is at stake. As women weigh their options, the choices they make raise questions about whose priorities should count in domestic, health, and family worlds. The varied experiences of women illustrate that there are many routes to living well or poorly with diabetes, and these are not always the ones canonized in biomedical models of diabetes management.  
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Suppressing the Diseases of Animals and Man
Theobald Smith, Microbiologist
Claude E. Dolman and Richard J. Wolfe
Harvard University Press, 2003

Theobald Smith (1859–1934) is widely considered to be America’s first significant medical scientist and the world’s leading comparative pathologist. Entering the new field of infectious diseases as a young medical graduate, his research in bacteriology, immunology, and parasitology produced many important and basic discoveries. His most significant accomplishment was proving for the first time that an infectious disease could be transmitted by an arthropod agent. He also made significant discoveries on anaphylaxis, vaccine production, bacterial variation, and a host of other methods and diseases. His work on hog cholera led to the selection of the paratyphoid species causing enteric fever as the prototype of the eponymous Salmonella genus, mistakenly named for his chief at the U.S. Department of Agriculture, Daniel Salmon, who first reported the discovery in 1886, although the work was undertaken by Smith alone.

In 1895, Smith began a twenty-year career as teacher and researcher at the Harvard Medical School and director of the biological laboratory at the Massachusetts State Board of Health. In 1902, when the Rockefeller Institute for Medical Research was founded, he was offered but declined its directorship; however, in 1914, when the Institute established a division of animal pathology, he became director of its research division. Suppressing the Diseases of Animals and Man, the first book-length biography of Smith to appear in print, is based primarily on personal papers and correspondence that have remained in the possession of his family until now.

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Surviving HIV/AIDS in the Inner City
How Resourceful Latinas Beat the Odds
Chase, Sabrina
Rutgers University Press, 2011
Surviving HIV/AIDS in the Inner City explores the survival strategies of poor, HIV-positive Puerto Rican women by asking four key questions: Given their limited resources, how did they manage an illness as serious as HIV/AIDS? Did they look for alternatives to conventional medical treatment? Did the challenges they faced deprive them of self-determination, or could they help themselves and each other? What can we learn from these resourceful women?



Based on her work with minority women living in Newark, New Jersey, Sabrina Marie Chase illuminates the hidden traps and land mines burdening our current health care system as a whole. For the women she studied, alliances with doctors, nurses, and social workers could literally mean the difference between life and death. By applying the theories of sociologist Pierre Bourdieu to the day-to-day experiences of HIV-positive Latinas, Chase explains why some struggled and even died while others flourished and thrived under difficult conditions. These gripping, true-life stories advocate for those living with chronic illness who depend on the health care "safety net." Through her exploration of life and death among Newark's resourceful women, Chase provides the groundwork for inciting positive change in the U.S. health care system.
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