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Blood on Their Hands
How Greedy Companies, Inept Bureaucracy, and Bad Science Killed Thousands of Hemophiliacs
Weinberg, Eric
Rutgers University Press, 2017
A few short years after HIV first entered the world blood supply in the late 1970s and early 1980s, over half the hemophiliacs in the United States were infected with the virus. But this was far more than just an unforeseeable public health disaster. Negligent doctors, government regulators, and Big Pharma all had a hand in this devastating epidemic.
 
Blood on Their Hands is an inspiring, firsthand account of the legal battles fought on behalf of hemophiliacs who were unwittingly infected with tainted blood. As part of the team behind the key class action litigation filed by the infected, young New Jersey lawyer Eric Weinberg was faced with a daunting task: to prove the negligence of a powerful, well-connected global industry worth billions. Weinberg and journalist Donna Shaw tell the dramatic story of how idealistic attorneys and their heroic, mortally-ill clients fought to achieve justice and prevent further infections. A stunning exposé of one of the American medical system’s most shameful debacles, Blood on Their Hands is a rousing reminder that, through perseverance, the victims of corporate greed can sometimes achieve great victory.
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Health Dimensions of Sex and Reproduction
The Global Burden of Sexually Transmitted Diseases, HIV, Maternal Conditions, Perinatal Disorders, and Congenital Anomalies
Christopher J. L. Murray
Harvard University Press, 1998

From the health risks of sexual activity to those of pregnancy, abortion, and childbirth, reproduction constitutes enormous risks to a woman’s health. Ill-health conditions related to sex and reproduction account for 25 percent of the global disease burden in adult women. In sub-Saharan Africa, they account for over 40 percent. The catastrophic effects of reproductive ill-health, however, are not limited to women; for infants and adult men, they inflict 25 percent and 1 percent respectively of the global burden.

This volume offers comprehensive data and detailed discussions of the epidemiologies of three sexually transmitted diseases, HIV, and five specific maternal conditions, as well as those of congenital anomalies and perinatal conditions. Projections of the HIV epidemic are provided: by 2020 HIV is projected to double to 2.5 percent of the global disease burden.

Health Dimensions of Sex and Reproduction will serve as a comprehensive reference for epidemiologists, public health specialists, practitioners and advocates of STD and HIV prevention, and reproductive and neonatal health.

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Iatrogenicity
Causes and Consequences of Iatrogenesis in Cardiovascular Medicine
Gussak, Ihor B
Rutgers University Press, 2017
Iatrogenesis is the occurrence of untoward effects resulting from actions of health care providers, including medical errors, medical malpractice, practicing beyond one’s expertise, adverse effects of medication, unnecessary treatment, inappropriate screenings, and surgical errors. This is a huge public health issue: tens to hundreds of thousands of deaths are attributed to iatrogenic causes each year in the U.S., and vulnerable populations such as the elderly and minorities are particularly susceptible. 

Edited by two renowned cardiology experts, Iatrogenicity: Causes and Consequences of Iatrogenesis in Cardiovascular Medicine addresses both the iatrogenicity that arises with cardiovascular interventions, as well as non-cardiovascular interventions that result in adverse consequences on the cardiovascular system. The book aims to achieve three things: to summarize the available information on this topic in a single high-yield volume; to highlight the human and financial cost of iatrogenesis; and to describe and propose potential interventions to ameliorate the effects of iatrogenesis. This accessible book is a practical reference for any practicing physician who sees patients with cardiovascular issues. .
 
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The Man with a Shattered World
The History of a Brain Wound
A. R. Luria
Harvard University Press, 1987

Russian psychologist A. R. Luria presents a compelling portrait of a man’s heroic struggle to regain his mental faculties. A soldier named Zasetsky, wounded in the head at the battle of Smolensk in 1943, suddenly found himself in a frightening world: he could recall his childhood but not his recent past; half his field of vision had been destroyed; he had great difficulty speaking, reading, and writing.

Much of the book consists of excerpts from Zasetsky’s own diaries. Laboriously, he records his memories in order to reestablish his past and to affirm his existence as an intelligent being. Luria’s comments and interpolations provide a valuable distillation of the theory and techniques that guided all of his research. His “digressions” are excellent brief introductions to the topic of brain structure and its relation to higher mental functions.

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Medication in Maternity
Infant Exposure and Maternal Information
Yvonne Brackbill, Karen McManus, and Lynn Woodward
University of Michigan Press, 1985
Mothers often know very little about the drugs they receive during pregnancy and even less about the drugs they consume during childbirth. The adverse fetal effects of drugs—whether prescription or over-the-counter—and the information mothers receive from the drug and medical communities about those drugs are shown in this International Academy for Research in Learning Disabilities monograph. The research for the study presented in Medication in Maternity included 602 mothers, and as such must be seen as a significant contribution to the field of neonatology in general and to learning disabilities specifically. The authors' findings indicate that many infants are exposed to prenatal and during-birth drugs that could cause learning difficulties or have other toxic effects, and that mothers are rarely told what drugs they are taking or how those drugs could harm their child.
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Message in a Bottle
The Making of Fetal Alcohol Syndrome
Janet Golden
Harvard University Press, 2006

A generation has passed since a physician first noticed that women who drank heavily while pregnant gave birth to underweight infants with disturbing tell-tale characteristics. Women whose own mothers enjoyed martinis while pregnant now lost sleep over a bowl of rum raisin ice cream. In Message in a Bottle, Janet Golden charts the course of Fetal Alcohol Syndrome (FAS) through the courts, media, medical establishment, and public imagination.

Long considered harmless during pregnancy (doctors even administered it intravenously during labor), alcohol, when consumed by pregnant women, increasingly appeared to be a potent teratogen and a pressing public health concern. Some clinicians recommended that women simply moderate alcohol consumption; others, however, claimed that there was no demonstrably safe level for a developing fetus, and called for complete abstinence. Even as the diagnosis gained acceptance and labels appeared on alcoholic beverages warning pregnant women of the danger, FAS began to be de-medicalized in some settings. More and more, FAS emerged in court cases as a viable defense for people charged with serious, even capital, crimes and their claims were rejected.

Golden argues that the reaction to FAS was shaped by the struggle over women's relatively new abortion rights and the escalating media frenzy over "crack" babies. It was increasingly used as evidence of the moral decay found within marginalized communities--from inner-city neighborhoods to Indian reservations. With each reframing, FAS became a currency traded by politicians and political commentators, lawyers, public health professionals, and advocates for underrepresented minorities, each pursuing separate aims.

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My Mother's Hip
Lessons From The World Of Eldercare
Luisa Margolies
Temple University Press, 2004
Some 400,000 hip fractures occur every year, the vast majority among the elderly; all too often these fractures are associated with death or severe disability. After her mother's double hip fracture, Luisa Margolies immersed herself in identifying and coordinating the services and professionals needed to provide critical care for an elderly person. She soon realized that the American medical system is ill prepared to deal with the long-term care needs of our graying society. The heart of My Mother's Hip is taken up with the author's day-to-day observations as her mother's condition worsened, then improved only to worsen again, while her father became increasingly anxious and disoriented. As both a devoted daughter and a skilled anthropologist, Margolies vividly renders her interactions with physicians, nurses, hospital workers, nursing home administrators, the Medicare bureaucracy, home care providers, and her parents. In the Lessons chapter that follows each episode, she discusses in a broader context the weighty decisions that adult children must make on their parents' behalf and the emotional toll their responsibility takes. Here she addresses the complex practical issues that commonly arise in such situations: understanding the consequences of hip fracture and its treatment, preparing health care proxies and advanced directives, enabling elders to remain at home, and the heartbreaking dilemma of prolonging life. Like many adult children, Margolies learned her lessons about eldercare in the midst of crises. This book is intended to ease the information-gathering and decision-making processes for others involved in eldercare.
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A Parent’s Guide to Spina Bifida
Beth-Ann Bloom
University of Minnesota Press, 1988
Beth-Ann Bloom and Edward Seljeskog have written this book to explain more about spina bidifa: to assist parents and relatives in absorbing the wealth of medical information and facts available about the disorder and the conditions associated with it. The authors cover what is known about causation--addressing the question of whether other children might be born with the disorder--available treatment, and what parents can do to help their child cope with spina bifida from infancy to young adulthood.
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Partial Stories
Maternal Death from Six Angles
Claire L. Wendland
University of Chicago Press, 2022
A close look at stories of maternal death in Malawi that considers their implications in the broader arena of medical knowledge.

By the early twenty-first century, about one woman in twelve could expect to die of a pregnancy or childbirth complication in Malawi. Specific deaths became object lessons. Explanatory stories circulated through hospitals and villages, proliferating among a range of practitioners: nurse-midwives, traditional birth attendants, doctors, epidemiologists, herbalists. Was biology to blame? Economic underdevelopment? Immoral behavior? Tradition? Were the dead themselves at fault? 

In Partial Stories, Claire L. Wendland considers these explanations for maternal death, showing how they reflect competing visions of the past and shared concerns about social change. Drawing on extended fieldwork, Wendland reveals how efforts to legitimate a single story as the authoritative version can render care more dangerous than it might otherwise be. Historical, biological, technological, ethical, statistical, and political perspectives on death usually circulate in different expert communities and different bodies of literature. Here, Wendland considers them together, illuminating dilemmas of maternity care in contexts of acute change, chronic scarcity, and endemic inequity within Malawi and beyond.
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Side Effects and Complications
The Economic Consequences of Health-Care Reform
Casey B. Mulligan
University of Chicago Press, 2015
The Affordable Care Act will have a dangerous effect on the American economy. That may sound like a political stance, but it’s a conclusion directly borne out by economic forecasts.  In Side Effects and Complications, preeminent labor economist Casey B. Mulligan brings to light the dire economic realities that have been lost in the ideological debate over the ACA, and he offers an eye-opening, accessible look at the price American citizens will pay because of it.

Looking specifically at the labor market, Mulligan reveals how the costs of health care under the ACA actually create implicit taxes on individuals, and how increased costs to employers will be passed on to their employees. Mulligan shows how, as a result, millions of workers will find themselves in a situation in which full-time work, adjusted for the expense of health care, will actually pay less than part-time work or even not working at all. Analyzing the incentives—or lack thereof—for people to earn more by working more, Mulligan offers projections on how many hours people will work and how productively they will work, as well as how much they will spend in general. Using the powerful tools of economics, he then illustrates the detrimental consequences on overall employment in the near future.

Drawing on extensive knowledge of the labor market and the economic theories at its foundation, Side Effects and Complications offers a crucial wake-up call about the risks the ACA poses for the economy. Plainly laying out the true costs of the ACA, Mulligan’s grounded and thorough predictions are something that workers and policy makers cannot afford to ignore.
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Silicone Survivors
Women's Experiences with Breast Implants
Susan Zimmermann
Temple University Press, 1998
Susan Zimmermann talked with forty women about perhaps one of the most sensitive issues of body image and health - their breasts, the chief attribute of femininity. In the aftermath of the early 1990s controversy over the use of silicone breast implants, how do women decide to undergo surgery o enhance or reconstruct their bodies? How does surgery alter a woman's self-image? How did they face the possibility of debilitating autoimmune disease from rupturing or leaking implants?

Some opted for breast implants after mastectomies, others for cosmetic reasons. Some felt empowered by the surgery: "Being a woman, I just like breasts and felt like I got ripped off. ... I did it for myself." Others were pressured by their husbands: "He used to make fun of parts of my body. .... And, he made me believe that if I was ever to leave him, no one would have anything to do with me because I was this deformed type of person."

After surgery, some women were ecstatic, while others had a sense of inner conflict about what they had done to themselves: were they "faking it"? And a few were angry: "I was really angry inside that I had  had to put plastic bags filled with chemicals in my body in order for me to feel like I could do the Hoochie Koo on Saturday nights. ... I didn't wear tight clothes; I didn't want my children to find out."

Now, having faced years of medical and personal uncertainty, many have coped by reassessing their lives and their relationships, by sharing information and support with other women with implants, outreach that became a means for self-empowerment.
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Vaccine Hesitancy
Public Trust, Expertise, and the War on Science
Maya J. Goldenberg
University of Pittsburgh Press, 2021
Winner, 2022 PSA Women's Caucus Prize in Feminist Philosophy of Science Award

The public has voiced concern over the adverse effects of vaccines from the moment Dr. Edward Jenner introduced the first smallpox vaccine in 1796. The controversy over childhood immunization intensified in 1998, when Dr. Andrew Wakefield linked the MMR vaccine to autism. Although Wakefield’s findings were later discredited and retracted, and medical and scientific evidence suggests routine immunizations have significantly reduced life-threatening conditions like measles, whooping cough, and polio, vaccine refusal and vaccine-preventable outbreaks are on the rise. This book explores vaccine hesitancy and refusal among parents in the industrialized North. Although biomedical, public health, and popular science literature has focused on a scientifically ignorant public, the real problem, Maya J. Goldenberg argues, lies not in misunderstanding, but in mistrust. Public confidence in scientific institutions and government bodies has been shaken by fraud, research scandals, and misconduct. Her book reveals how vaccine studies sponsored by the pharmaceutical industry, compelling rhetorics from the anti-vaccine movement, and the spread of populist knowledge on social media have all contributed to a public mistrust of the scientific consensus. Importantly, it also emphasizes how historical and current discrimination in health care against marginalized communities continues to shape public perception of institutional trustworthiness. Goldenberg ultimately reframes vaccine hesitancy as a crisis of public trust rather than a war on science, arguing that having good scientific support of vaccine efficacy and safety is not enough. In a fraught communications landscape, Vaccine Hesitancy advocates for trust-building measures that focus on relationships, transparency, and justice.
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A World without Words
The Social Construction of Children Born Deaf and Blind
David Goode, foreword by Irving Kenneth Zola
Temple University Press, 1994

During the Rubella Syndrome epidemic of the 1960s, many children were born deaf, blind, and mentally disabled. David Goode has devoted his life and career to understanding such people's world, a world without words, but not, the author confirms, one without communication. This book is the result of his studies of two children with congenital deaf-blindness and mental retardation.

Goode spent countless hours observing, teaching, and playing with Christina, who had been institutionalized since age six, and Bianca, who remained in the care of her parents. He also observed the girls' parents, school, and medical environments, exploring the unique communication practices—sometimes so subtle they are imperceptible to outsiders—that family and health care workers create to facilitate innumerable every day situations. A World Without Words presents moving and convincing evidence that human beings both with and without formal language can understand and communicate with each other in many ways.

Through various experiments in such unconventional forms of communication as playing guitar, mimicking, and body movements like jumping, swinging, and rocking, Goode established an understanding of these children on their own terms. He discovered a spectrum of non-formal language through which these children create their own set of symbols within their own reality, and accommodate and maximize the sensory resources they do have. Ultimately, he suggests, it is impractical to attempt to interpret these children's behaviors using ideas about normal behavior of the hearing and seeing world.

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