Studies in Social Medicine

One of the transformations facing health care in the twenty-first century is the safe, effective, and appropriate integration of conventional, or biomedical, care with complementary and alternative medical (CAM) therapies, such as acupuncture, chiropractic, massage therapy, herbal medicine, and spiritual healing. In Healing at the Borderland of Medicine and Religion, Michael H. Cohen discusses the need for establishing rules and standards to facilitate appropriate integration of conventional and CAM therapies. The kind of integrated health care many patients seek dwells in a borderland between the physical and the spiritual, between the quantifiable and the immeasurable, Cohen observes. But the present environment fails to present clear rules for clinicians regarding which therapies to recommend, accept, or discourage, and how to discuss patient requests regarding inclusion of such therapies. Focusing on the social, intellectual, and spiritual dimensions of integrative care and grounding his analysis in the attendant legal, regulatory, and institutional changes, Cohen provides a multidisciplinary examination of the shift to a more fluid, pluralistic health care environment.One of the transformations facing health care in the twenty-first century is the safe, effective, and appropriate integration of conventional (or biomedical) care with complementary and alternative medical (CAM) therapies, such as acupuncture, chiropractic, massage therapy, herbal medicine, and spiritual healing. Michael H. Cohen discusses the need for establishing rules and standards to facilitate appropriate integration of conventional and CAM therapies. The kind of integrated health care many patients seek dwells in a borderland between the physical and the spiritual. But the present environment fails to present clear rules for clinicians regarding which therapies to recommend, accept, or discourage, and how to discuss patient requests regarding inclusion of such therapies. Focusing on the social, intellectual, and spiritual dimensions of integrative care and grounding his analysis in the attendant legal, regulatory, and institutional changes, Cohen provides a multidisciplinary examination of the shift to a more fluid, pluralistic health care environment.-->

One of medicine's most remarkable therapeutic triumphs was the discovery of insulin in 1921. The drug produced astonishing results, rescuing children and adults from the deadly grip of diabetes. But as Chris Feudtner demonstrates, the subsequent transformation of the disease from a fatal condition into a chronic illness is a story of success tinged with irony, a revealing saga that illuminates the complex human consequences of medical intervention. Bittersweet chronicles this history of diabetes through the compelling perspectives of people who lived with this disease. Drawing on a remarkable body of letters exchanged between patients or their parents and Dr. Elliot P. Joslin and the staff of physicians at his famed Boston clinic, Feudtner examines the experience of living with diabetes across the twentieth century, highlighting changes in treatment and their profound effects on patients' lives. Although focused on juvenile-onset, or Type 1, diabetes, the themes explored in Bittersweet have implications for our understanding of adult-onset, or Type 2, diabetes, as well as a host of other diseases that, thanks to drugs or medical advances, are being transformed from acute to chronic conditions. Indeed, the tale of diabetes in the post-insulin era provides an ideal opportunity for exploring the larger questions of how medicine changes our lives.

Those who work in bioethics and the medical humanities come from many different backgrounds, such as health care, philosophy, law, the social sciences, and religious studies. The work they do also varies widely: consulting on ethical issues in patient care, working with legislatures, dealing with the media, teaching, speaking, writing and more.Writing as a participant in this developing field, Judith Andre offers a model to unify its diversity. Using the term "bioethics" broadly, to include all the medical humanities, she articulates ideals for the field, identifies its temptations and moral pitfalls, and argues for the central importance of certain virtues. Perhaps the most original of these is the virtue of choosing projects well, which demands not only broadening the field's focus but also understanding the forces that have kept it too narrow. Andre offers an imaginative analysis of the special problems presented by interdisciplinary work and discusses the intellectual virtues necessary for its success. She calls attention to the kinds of professional communities that are necessary to support good work.The book draws from interviews with many people in the field and from the findings of social scientists. It includes the author's personal reflections, several extended allegories, and philosophical analysis.Those who work in bioethics and the medical humanities come from many different backgrounds: health care, philosophy, law, social sciences, religious studies, and more. The work they do also varies widely. Writing as a participant in this developing field, Judith Andre offers a model to unify its diversity. Using the term "bioethics" broadly, to include all the medical humanities, she articulates ideals for the field, identifies its temptations and moral pitfalls, and argues for the central importance of certain virtues.-->

Every day, thousands of people quietly face decisions as agonizing as those made famous in the Terri Schiavo case. Throughout that controversy, all kinds of people--politicians, religious leaders, legal and medical experts--made emphatic statements about the facts and offered even more certain opinions about what should be done. To many, courts were either ordering Terri's death by starvation or vindicating her constitutional rights. Both sides called for simple answers. If That Ever Happens to Me details why these simple answers were not right for Terri Schiavo and why they are not right for end-of-life decisions today.Lois Shepherd looks behind labels like "starvation," "care," or "medical treatment" to consider what care and feeding really mean, when feeding tubes might be removed, and why disability groups, the faithful, and even the dying themselves often suggest end-of-life solutions that they might later regret. For example, Shepherd cautions against living wills as a pat answer. She provides evidence that demanding letter-perfect documents can actually weaken, rather than bolster, patient choice. The actions taken and decisions made during Terri Schiavo's final years will continue to have repercussions for thousands of others--those nearing death, their families, health-care professionals, attorneys, lawmakers, clergy, media, researchers, and ethicists. If That Ever Happens to Me is an excellent choice for anyone interested in end-of-life law, policy, and ethics--particularly readers seeking a deeper understanding of the issues raised by Terri Schiavo's case.

The last several years have seen a sharpening of debate in the United States regarding the problem of steadily increasing medical expenditures, as well as inflation in health care costs, a scarcity of health care resources, and a lack of access for a growing number of people in the national health care system. Some observers suggest that we in fact face two crises: the crisis of scarce resources and the crisis of inadequate language in the discourse of ethics for framing a response. Laurie Zoloth offers a bold claim: to renew our chances of achieving social justice, she argues, we must turn to the Jewish tradition. That tradition envisions an ethics of conversational encounter that is deeply social and profoundly public, as well as offering resources for recovering a language of community that addresses the issues raised by the health care allocation debate. Constructing her argument around a careful analysis of selected classic and postmodern Jewish texts and a thoughtful examination of the Oregon health care reform plan, Zoloth encourages a radical rethinking of what has become familiar ground in debates on social justice.

Bioethics needs an expanded moral vision. Born in the ferment of the 1970s, the field responded to rapid developments in biomedical technology and injustices in clinical care and research. Since then, bioethics has predominantly focused on respect for autonomy, beneficence and nonmaleficence, and the zero-sum "lifeboat" ethics of distributive justice, applying these principles almost exclusively within the walls of medical institutions. It is now time for bioethics to take full account of the problems of health disparities and structural injustice that are made newly urgent by the COVID-19 pandemic and the effects of climate change. This book shows why and how the field must embrace a broader and more meaningful view of justice, principally by incorporating the tools and insights of the social sciences, epidemiology, and public health. Nancy M. P. King, Gail E. Henderson, and Larry R. Churchill make the case for a more social understanding and application of justice, a deeper humility in assessing expertise in bioethics consulting, a broader and more relevant research agenda, and greater appreciation of the profound health implications of global warming.

After the 1959 Cuban Revolution, hundreds of thousands of Cuban refugees came to Miami. With this influx, the city's health care system was overwhelmed not just by the number of patients but also by the differences in culture. Mainstream medicine was often inaccessible or inadequate to Miami's growing community of Latin American and Caribbean immigrants. Instead, many sought care from alternative, often unlicensed health practitioners. During the 1960s, a recently arrived Cuban feeling ill might have visited a local clinica, a quasi-legal storefront doctor's office, or a santero, a priest in the Afro-Cuban religion of Lukumi or Santeria. This exceptionally diverse medical scene would catch the attention of anthropologists who made Miami's multiethnic population into a laboratory for cross-cultural care. By the 1990s, the medical establishment in Miami had matured into a complex and culturally informed health-delivery system, generating models of care that traveled far beyond the city. Some clinicas had transformed into lucrative HMOs, Santeria became legally protected by the courts, and medical anthropology played a significant role in the rise of global health. Catherine Mas shows how immigrants reshaped American medicine while the clinic became a crucial site for navigating questions of wellness, citizenship, and culture.

The Clinton administration's failed health care reform was not the first attempt to establish government-sponsored medical coverage in the United States. From 1915 to 1920, Progressive reformers led a spirited but ultimately unsuccessful crusade for compulsory health insurance in New York State. Beatrix Hoffman argues that this first health insurance campaign was a crucial moment in the creation of the American welfare state and health care system. Its defeat, she says, gave rise to an uneven and inegalitarian system of medical coverage and helped shape the limits of American social policy for the rest of the century. Hoffman examines each of the major combatants in the battle over compulsory health insurance. While physicians, employers, the insurance industry, and conservative politicians forged a uniquely powerful coalition in opposition to health insurance proposals, she shows, reformers' potential allies within women's organizations and the labor movement were bitterly divided. Against the backdrop of World War I and the Red Scare, opponents of reform denounced government-sponsored health insurance as "un-American" and, in the process, helped fashion a political culture that resists proposals for universal health care and a comprehensive welfare state even today.

Prozac and its chemical cousins, Paxil, Celexa, and Zoloft, are some of the most profitable and most widely used drugs in America. Their use in the treatment of a multitude of disorders--from generalized anxiety disorder and premenstrual syndrome to eating disorders and sexual compulsions--has provoked a whirlwind of public debate. Talk shows ask, Why is Prozac so popular? What, exactly, do these drugs treat? But sustained critical discussion among bioethicists and medical humanists has been surprisingly absent.The eleven essays in Prozac as a Way of Life provide the groundwork for a much-needed philosophical discussion of the ethical and cultural dimensions of the popularity of SSRI antidepressants. Focusing on the increasing use of medication as a means of self-enhancement, contributors from the fields of psychiatry, psychology, bioethics, and the medical humanities address issues of identity enhancement, the elasticity of psychiatric diagnosis, and the aggressive marketing campaigns of pharmaceutical companies. They do not question the fact that these antidepressants can, in some cases, provide great benefit to alleviate real suffering. What they do question is the abundant popularity of these drugs and that popularity's relationship to American culture and ideas of selfhood. Contributors:Tod Chambers, Northwestern University Feinberg School of Medicine, ChicagoDavid DeGrazia, George Washington UniversityJames C. Edwards, Furman UniversityCarl Elliott, University of Minnesota Center for BioethicsDavid Healy, University of Wales College of MedicineLaurence J. Kirmayer, McGill UniversityPeter D. Kramer, Brown UniversityErik Parens, The Hastings CenterLauren Slater, AfterCare Services, BostonSusan Squier, Pennsylvania State UniversityLaurie Zoloth, Northwestern University Center for Genetic Medicine, Chicago

Between 1932 and 1972, approximately six hundred African American men in Alabama served as unwitting guinea pigs in what is now considered one of the worst examples of arrogance, racism, and duplicity in American medical research--the Tuskegee syphilis study. Told they were being treated for "bad blood," the nearly four hundred men with late-stage syphilis and two hundred disease-free men who served as controls were kept away from appropriate treatment and plied instead with placebos, nursing visits, and the promise of decent burials. Despite the publication of more than a dozen reports in respected medical and public health journals, the study continued for forty years, until extensive media coverage finally brought the experiment to wider public knowledge and forced its end.This edited volume gathers articles, contemporary newspaper accounts, selections from reports and letters, reconsiderations of the study by many of its principal actors, and works of fiction, drama, and poetry to tell the Tuskegee story as never before. Together, these pieces illuminate the ethical issues at play from a remarkable breadth of perspectives and offer an unparalleled look at how the study has been understood over time.

In this multidisciplinary study, Ann Folwell Stanford reads literature written by U.S. women of color to propose a rethinking of modern medical practice, arguing that personal health and social justice are inextricably linked. Drawing on feminist ethics to explore the work of eleven novelists, Stanford challenges medicine to position itself more deeply within the communities it serves, especially the poor and marginalized. However, she also argues that medicine must recognize its limits and join forces with the nonmedical community in the struggle for social justice. In literary representations of physical and emotional states of illness and health, Stanford identifies issues related to public health, medical ethics, institutionalized racism, women's health, domestic abuse, and social justice that are important to discussions about how to improve health and health care. She argues that in either direct or indirect ways, the eleven novelists considered here push us to see health not only as an individual condition but also as a complex network of individual, institutional, and social changes in which wellness can be a possibility for the majority rather than a privileged few. The novelists whose works are discussed are Toni Cade Bambara, Paule Marshall, Gloria Naylor, Leslie Marmon Silko, Toni Morrison, Louise Erdrich, Sandra Cisneros, Bebe Moore Campbell, Sapphire, Ana Castillo, and Octavia Butler.

Throughout Latin America, social medicine has been widely recognized for its critical perspectives on mainstream understandings of health and for its progressive policy achievements. Nevertheless, it has been an elusive subject: hard to define, with puzzling historical discontinuities and misconceptions about its origins. Drawing on a vast archive and with an ambitious narrative scope that transcends national borders, Eric D. Carter offers the first comprehensive intellectual and political history of the social medicine movement in Latin America, from the early twentieth century to the present day. While maintaining a consistent focus on health equity, social medicine has evolved with changing conditions in the region. Carter shows how it shaped early Latin American welfare states, declined with the dominance of midcentury technocratic health planning, resurged in the 1970s in solidarity against authoritarian regimes, and later resisted neoliberal reforms of the health sector. He centers socialist and anarchist doctors, political exiles, intellectuals, populist leaders, and rebellious technocrats from Argentina, Chile, Brazil, and other countries who responded to and shaped a dynamic political environment around health equity. The lessons from this history will inform new thinking about how to achieve health equity in the twenty-first century.

Over the last twenty years, type 2 diabetes skyrocketed to the forefront of global public health concern. In this book, Mari Armstrong-Hough examines the rise in and response to the disease in two societies: the United States and Japan. Both societies have faced rising rates of diabetes, but their social and biomedical responses to its ascendance have diverged. To explain the emergence of these distinctive strategies, Armstrong-Hough argues that physicians act not only on increasingly globalized professional standards but also on local knowledge, explanatory models, and cultural toolkits. As a result, strategies for clinical management diverge sharply from one country to another. Armstrong-Hough demonstrates how distinctive practices endure in the midst of intensifying bio medicalization, both on the part of patients and on the part of physicians, and how these differences grow from broader cultural narratives about diabetes in each setting.

The need for informed analyses of health policy is now greater than ever. The twelve essays in this volume show that public debates routinely bypass complex ethical, socio-cultural, historical, and political questions about how we should address ideals of justice and equality in health care. Integrating perspectives from the humanities, social sciences, medicine, and public health, this volume illuminates the relationships between justice and health inequalities to enrich debates. Understanding Health Inequalities and Justice explores three questions: How do scholars approach relations between health inequalities and ideals of justice? When do justice considerations inform solutions to health inequalities, and how do specific health inequalities affect perceptions of injustice? And how can diverse scholarly approaches contribute to better health policy? From addressing patient agency in an inequitable health care environment to examining how scholars of social justice and health care amass evidence, this volume promotes a richer understanding of health and justice and how to achieve both.

The 1954 Brown v. Board of Education decision required desegregation of America's schools, but it also set in motion an agonizing multidecade debate over race, class, and IQ. In this innovative book, Michael E. Staub investigates neuropsychological studies published between Brown and the controversial 1994 book The Bell Curve. In doing so, he illuminates how we came to view race and intelligence today. In tracing how research and experiments around such concepts as learned helplessness, deferred gratification, hyperactivity, and emotional intelligence migrated into popular culture and government policy, Staub reveals long-standing and widespread dissatisfaction-not least among middle-class whites-with the metric of IQ. He also documents the devastating consequences-above all for disadvantaged children of color-as efforts to undo discrimination and create enriched learning environments were recurrently repudiated and defunded. By connecting psychology, race, and public policy in a single narrative, Staub charts the paradoxes that have emerged and that continue to structure investigations of racism even into the era of contemporary neuroscientific research.

In a work that spans the twentieth century, Nancy Tomes questions the popular--and largely unexamined--idea that in order to get good health care, people must learn to shop for it. Remaking the American Patient explores the consequences of the consumer economy and American medicine having come of age at exactly the same time. Tracing the robust development of advertising, marketing, and public relations within the medical profession and the vast realm we now think of as "health care," Tomes considers what it means to be a "good" patient. As she shows, this history of the coevolution of medicine and consumer culture tells us much about our current predicament over health care in the United States. Understanding where the shopping model came from, why it was so long resisted in medicine, and why it finally triumphed in the late twentieth century helps explain why, despite striking changes that seem to empower patients, so many Americans remain unhappy and confused about their status as patients today.

In the late nineteenth century, as Americans debated the "woman question," a battle over the meaning of biology arose in the medical profession. Some medical men claimed that women were naturally weak, that education would make them physically ill, and that women physicians endangered the profession. Mary Putnam Jacobi (1842-1906), a physician from New York, worked to prove them wrong and argued that social restrictions, not biology, threatened female health. Mary Putnam Jacobi and the Politics of Medicine in Nineteenth-Century America is the first full-length biography of Mary Putnam Jacobi, the most significant woman physician of her era and an outspoken advocate for women's rights. Jacobi rose to national prominence in the 1870s and went on to practice medicine, teach, and conduct research for over three decades. She campaigned for co-education, professional opportunities, labor reform, and suffrage--the most important women's rights issues of her day. Downplaying gender differences, she used the laboratory to prove that women were biologically capable of working, learning, and voting. Science, she believed, held the key to promoting and producing gender equality. Carla Bittel's biography of Jacobi offers a piercing view of the role of science in nineteenth-century women's rights movements and provides historical perspective on continuing debates about gender and science today.

In the early 1970s, a new wave of public service announcements urged parents to "help end an American tradition" of child abuse. The message, relayed repeatedly over television and radio, urged abusive parents to seek help. Support groups for parents, including Parents Anonymous, proliferated across the country to deal with the seemingly burgeoning crisis. At the same time, an ever-increasing number of abused children were reported to child welfare agencies, due in part to an expansion of mandatory reporting laws and the creation of reporting hotlines across the nation. Here, Mical Raz examines this history of child abuse policy and charts how it changed since the late 1960s, specifically taking into account the frequency with which agencies removed African American children from their homes and placed them in foster care. Highlighting the rise of Parents Anonymous and connecting their activism to the sexual abuse moral panic that swept the country in the 1980s, Raz argues that these panics and policies-as well as biased viewpoints regarding race, class, and gender-played a powerful role shaping perceptions of child abuse. These perceptions were often directly at odds with the available data and disproportionately targeted poor African American families above others.

Health is political. It entails fierce battles over the allocation of resources, arguments over the imposition of regulations, and the mediation of dueling public sentiments-all conflicts that are often narrated from a national, top-down view. In All Health Politics Is Local, Merlin Chowkwanyun shifts our focus, taking us to four very different places-New York City, Los Angeles, Cleveland, and Central Appalachia-to experience a national story through a regional lens. He shows how racial uprisings in the 1960s catalyzed the creation of new medical infrastructure for those long denied it, what local authorities did to curb air pollution so toxic that it made residents choke and cry, how community health activists and bureaucrats fought over who'd control facilities long run by insular elites, and what a national coal boom did to community ecology and health. “All Health Politics Is Local” shatters the notion of a single national health agenda. Health is and has always been political, shaped both by formal policy at the highest levels and by grassroots community battles far below.

New Orleans is a city that is rich in culture, music, and history. It has also long been a site of some of the most intense racially based medical inequities in the United States. Kevin McQueeney traces that inequity from the city's founding in the early eighteenth century through three centuries to the present. He argues that racist health disparities emerged as a key component of the city's slave-based economy and quickly became institutionalized with the end of Reconstruction and the rise of Jim Crow. McQueeney also shows that, despite legislation and court victories in the civil rights era, a segregated health care system still exists today. In addition to charting this history of neglect, McQueeney also suggests pathways to fix the deeply entrenched inequities, taking inspiration from the "long civil rights" framework and reconstructing the fight for improved health and access to care that started long before the boycotts, sit-ins, and marches of the 1950s and 1960s. In telling the history of how New Orleans has treated its Black citizens in its hospitals, McQueeney uncovers the broader story of how urban centers across the country have ignored Black Americans and their health needs for the entire history of the nation.

For most of the first half of the twentieth century, tuberculosis ranked among the top three causes of mortality among urban African Americans. Often afflicting an entire family or large segments of a neighborhood, the plague of TB was as mysterious as it was fatal. Samuel Kelton Roberts Jr. examines how individuals and institutions--black and white, public and private--responded to the challenges of tuberculosis in a segregated society. Reactionary white politicians and health officials promoted "racial hygiene" and sought to control TB through Jim Crow quarantines, Roberts explains. African Americans, in turn, protested the segregated, overcrowded housing that was the true root of the tuberculosis problem. Moderate white and black political leadership reconfigured definitions of health and citizenship, extending some rights while constraining others. Meanwhile, those who suffered with the disease--as its victims or as family and neighbors--made the daily adjustments required by the devastating effects of the "white plague." Exploring the politics of race, reform, and public health, Infectious Fear uses the tuberculosis crisis to illuminate the limits of racialized medicine and the roots of modern health disparities. Ultimately, it reveals a disturbing picture of the United States' health history while offering a vision of a more democratic future.

Advocates of rapid access to medicines and critics fearful of inadequate testing both argue that globalization will supersede national medical practices and result in the easy transfer of pharmaceuticals around the world. In Pharmacopolitics, Arthur Daemmrich challenges their assumptions by comparing drug laws, clinical trials, and systems for monitoring adverse reactions in the United States and Germany, two countries with similarly advanced systems for medical research, testing, and patient care. Daemmrich proposes that divergent "therapeutic cultures--the interrelationships among governments, patients, the medical profession, and the pharmaceutical industry--underlie national differences and explain variations in pharmaceutical markets and medical care. Daemmrich carries the United States-Germany comparison from 1950 to the present through case studies of Terramycin (an antibiotic), thalidomide (a sedative), propranolol (a heart medication), interleukin-2 (a cancer therapy), and indinavir (an AIDS drug). He points to different political constructions of "the patient" in the United States and Germany to clarify important differences in government policies and in the distribution of power among key social actors. Daemmrich advises that international regulatory harmonization and globalization in medicine must retain flexibility for social and political variation between countries, even as they achieve technical standardization.

In February 2003, an undocumented immigrant teen from Mexico lay dying in a prominent American hospital due to a stunning medical oversight--she had received a heart-lung transplantation of the wrong blood type. In the following weeks, Jesica Santillan's tragedy became a portal into the complexities of American medicine, prompting contentious debate about new patterns and old problems in immigration, the hidden epidemic of medical error, the lines separating transplant "haves" from "have-nots," the right to sue, and the challenges posed by "foreigners" crossing borders for medical care.This volume draws together experts in history, sociology, medical ethics, communication and immigration studies, transplant surgery, anthropology, and health law to understand the dramatic events, the major players, and the core issues at stake. Contributors view the Santillan story as a morality tale: about the conflicting values underpinning American health care; about the politics of transplant medicine; about how a nation debates deservedness, justice, and second chances; and about the global dilemmas of medical tourism and citizenship.Contributors:Charles Bosk, University of PennsylvaniaLeo R. Chavez, University of California, IrvineRichard Cook, University of ChicagoThomas Diflo, New York University Medical CenterJason Eberl, Indiana University-Purdue University IndianapolisJed Adam Gross, Yale University Jacklyn Habib, American Association of Retired PersonsTyler R. Harrison, Purdue UniversityBeatrix Hoffman, Northern Illinois UniversityNancy M. P. King, University of North Carolina at Chapel HillBarron Lerner, Columbia University Mailman School of Public HealthSusan E. Lederer, Yale UniversityJulie Livingston, Rutgers UniversityEric M. Meslin, Indiana University School of Medicine and Indiana University-Purdue University IndianapolisSusan E. Morgan, Purdue UniversityNancy Scheper-Hughes, University of California, BerkeleyRosamond Rhodes, Mount Sinai School of Medicine and The Graduate Center, City University of New YorkCarolyn Rouse, Princeton UniversityKaren Salmon, New England School of LawLesley Sharp, Barnard and Columbia University Mailman School of Public HealthLisa Volk Chewning, Rutgers UniversityKeith Wailoo, Rutgers University

Across a broad range of disciplines--in medicine, social science, and the humanities--researchers, scholars, teachers, and administrators increasingly are looking for new ways to approach ethical issues in research with human subjects. Questions about how relationships between funders and researchers should affect research design, for example, or whether the potential benefits of research can outweigh the importance of its subjects' interests are inadequately addressed by the prevailing, regulation-based research ethics paradigm. This book constitutes a reexamination of research ethics. It combines case studies and commentaries by a multidisciplinary group of scholars and researchers to explore such topics as informed consent, conflict of interest, confidentiality, and research on illegal behavior. All human subjects research takes place within complex social, cultural, and political contexts, the contributors argue. Increased consideration of the relationships between researchers and their subjects, funders, and institutions within these contexts will facilitate research that is sensitive and responsible as well as scientifically fruitful.Beyond Regulations features a keynote essay by Ruth Macklin. Other contributors are Marcela Aracena Alvarez, Jorge Balan, B. Susan Bauer, Alan F. Benjamin, Lynn Blanchard, Allan M. Brandt, J. Pat Browder, Barbara Entwisle, Sue E. Estroff, Renee C. Fox, Lara Freidenfelds, Gail E. Henderson, Nancy M. P. King, Loretta M. Kopelman, Ernest N. Kraybill, Barry M. Popkin, Silvina Ramos, Desmond K. Runyan, Jane Stein, Ronald P. Strauss, Keith A. Wailoo, and Cynthia Waszak.Across a broad range of disciplines--in biomedicine, the social sciences, and the humanities--researchers, scholars, administrators, and teachers increasingly struggle with questions of ethics in research with human subjects. All research takes place in complex social, cultural, political, and economic contexts; yet the prevailing principle-based research ethics paradigm does not adequately account for them. This book reexamines research ethics using a new relationships paradigm. Through in-depth cases, commentaries, and essays, a multidisciplinary group of scholars and researchers addresses informed consent, conflict of interest, confidentiality, and other issues, considering questions like: What relationships should researchers have with their subjects' communities? When researchers and subjects have different views about research, who should have control? How should relationships between funders and researchers affect research design? Can research be so potentially beneficial that its importance outweighs the interests of subjects? Examining the relationships between researchers and subjects, communities, funders, and institutions--including considerations of authority and voice--can facilitate human subjects research that is morally sensitive and responsible as well as scientifically fruitful.

Abortion is--and always has been--an arena for contesting power relations between women and men. When in 1973 the Supreme Court made the procedure legal throughout the United States, it seemed that women were at last able to make decisions about their own bodies. In the four decades that followed, however, abortion became ever more politicized and stigmatized. Abortion after Roe chronicles and analyzes what the new legal status and changing political environment have meant for abortion providers and their patients. Johanna Schoen sheds light on the little-studied experience of performing and receiving abortion care from the 1970s--a period of optimism--to the rise of the antiabortion movement and the escalation of antiabortion tactics in the 1980s to the 1990s and beyond, when violent attacks on clinics and abortion providers led to a new articulation of abortion care as moral work. As Schoen demonstrates, more than four decades after the legalization of abortion, the abortion provider community has powerfully asserted that abortion care is a moral good.

In this collection of essays, Lawrence O. Gostin, an internationally recognized scholar of AIDS law and policy, confronts the most pressing and controversial issues surrounding AIDS in America and around the world. He shows how HIV/AIDS affects the entire population--infected and uninfected--by influencing our social norms, our economy, and our country's role as a world leader. Now in the third decade of this pandemic, the nation and the world still fail to respond to the needs of persons living with HIV/AIDS and continue to tolerate injustice in their treatment, Gostin argues. AIDS, both in the United States and globally, deeply affects poor and marginalized populations, and many U.S. policies are based on conservative moral values rather than public health and social justice concerns. Gostin tackles the hard social, legal, political, and ethical issues of the HIV/AIDS pandemic: privacy and discrimination, travel and immigration, clinical trials and drug pricing, exclusion of HIV-infected health care workers, testing and treatment of pregnant women and infants, and needle-exchange programs. This book provides an inside account of AIDS policy debates together with incisive commentary. It is indispensable reading for advocates, scholars, health professionals, lawyers, and the concerned public.

By comparing institutions in Hawai'i and Louisiana designed to incarcerate individuals with a highly stigmatized disease, Colonizing Leprosy provides an innovative study of the complex relationship between U.S. imperialism and public health policy in the late nineteenth and early twentieth centuries. Focusing on the Kalaupapa Settlement in Moloka'i and the U.S. National Leprosarium in Carville, Michelle Moran shows not only how public health policy emerged as a tool of empire in America's colonies, but also how imperial ideologies and racial attitudes shaped practices at home.Although medical personnel at both sites considered leprosy a colonial disease requiring strict isolation, Moran demonstrates that they adapted regulations developed at one site for use at the other by changing rules to conform to ideas of how "natives" and "Americans" should be treated. By analyzing administrators' decisions, physicians' treatments, and patients' protests, Moran examines the roles that gender, race, ethnicity, and sexuality played in shaping both public opinion and health policy. Colonizing Leprosy makes an important contribution to an understanding of how imperial imperatives, public health practices, and patient activism informed debates over the constitution and health of American bodies.

German-born Marie Zakrzewska (1829-1902) was one of the most prominent female physicians of nineteenth-century America. Best known for creating a modern hospital and medical education program for women, Zakrzewska battled against the gendering of science and the restrictive definitions of her sex. In Science Has No Sex, Arleen Tuchman examines the life and work of a woman who continues to challenge historians of gender to this day. At a time when most women physicians laid claim to "female" qualities of care and nurturance to justify their professional choice, Zakrzewska insisted that all physicians, regardless of gender, should depend upon the rational faculties developed through training in the natural sciences. She viewed science as a democratizing tool--anyone could master science, she asserted, and therefore the doors to the elite profession of medicine should be opened to all.Shedding light on the changes that radically transformed medicine in the late nineteenth century, Tuchman's analysis also demonstrates how Zakrzewska's activism is important to the ongoing debate over the relationship between science and sex.

Offering a new perspective on medical progress in the nineteenth century, Steven M. Stowe provides an in-depth study of the midcentury culture of everyday medicine in the South. Reading deeply in the personal letters, daybooks, diaries, bedside notes, and published writings of doctors, Stowe illuminates an entire world of sickness and remedy, suffering and hope, and the deep ties between medicine and regional culture.In a distinct American region where climate, race and slavery, and assumptions about "southernness" profoundly shaped illness and healing in the lives of ordinary people, Stowe argues that southern doctors inhabited a world of skills, medicines, and ideas about sickness that allowed them to play moral, as well as practical, roles in their communities. Looking closely at medical education, bedside encounters, and medicine's larger social aims, he describes a "country orthodoxy" of local, social medical practice that highly valued the "art" of medicine. While not modern in the sense of laboratory science a century later, this country orthodoxy was in its own way modern, Stowe argues, providing a style of caregiving deeply rooted in individual experience, moral values, and a consciousness of place and time.

In the 1960s, policymakers and mental health experts joined forces to participate in President Lyndon Johnson's War on Poverty. In her insightful interdisciplinary history, physician and historian Mical Raz examines the interplay between psychiatric theory and social policy throughout that decade, ending with President Richard Nixon's 1971 veto of a bill that would have provided universal day care. She shows that this cooperation between mental health professionals and policymakers was based on an understanding of what poor men, women, and children lacked. This perception was rooted in psychiatric theories of deprivation focused on two overlapping sections of American society: the poor had less, and African Americans, disproportionately represented among America's poor, were seen as having practically nothing. Raz analyzes the political and cultural context that led child mental health experts, educators, and policymakers to embrace this deprivation-based theory and its translation into liberal social policy. Deprivation theory, she shows, continues to haunt social policy today, profoundly shaping how both health professionals and educators view children from low-income and culturally and linguistically diverse homes.

Medicine finally has discovered fatigue. Recent articles about various diseases conclude that fatigue has been under-recognized, underdiagnosed, and undertreated. Scholars in the social sciences and humanities have also ignored the phenomenon. As a result, we know little about what it means to live with this condition, especially given its diverse symptoms and causes. Emily K. Abel offers the first history of fatigue, one that is scrupulously researched, but also informed by her own experiences as a cancer survivor. Abel reveals how the limits of medicine and the American cultural emphasis on productivity intersect to stigmatize those with fatigue. Without an agreed-upon approach to confirm the problem through medical diagnosis, it is difficult to convince others that it is real. When fatigue limits our ability to work, our society sees us as burdens or worse. With her engaging and informative style, Abel gives us a synthetic history of fatigue and elucidates how it has been ignored or misunderstood, not only by medical professionals but also by American society as a whole.

The Mississippi Delta consistently ranks as having some of the worst health outcomes in the United States. Even with this stark reality, researcher David K. Jones (1981–2021) found "ripples of hope." For four years, Jones turned to residents and local leaders to learn firsthand the intricate connections between race, place, and health in the region. Using an innovative mix of photovoice, policy, and social science research, Jones weaves their insights with data analysis to show how local, state, and national policies and structures, whether or not intentional, constrain or expand daily choices that affect health. Blaming individuals for poor health choices isn't the remedy. Jones describes how a community-led, goal-oriented approach to creating health equity policies is needed and that everyone benefits when we ensure that all people can pursue a healthy, fulfilling life. In this compassionate and practical book, Jones provides a roadmap for anyone who would like to make a difference, wherever they live. Jones calls on his readers to act for change and provides examples from the Delta to show how. He reminds us that small steps-"ripples of hope"-can save lives and improve health.