Sickle cell disease (SCD) is a severe chronic illness and one of the world’s most common genetic conditions, with 400,000 children born annually with the disorder, mainly in Sub-Saharan Africa, India, Brazil, the Middle East and in diasporic African populations in North America and Europe. Biomedical treatments for SCD are increasingly available to the world’s affluent populations, while such medical care is available only in attenuated forms in Africa, India and to socio-economically disadvantaged groups in North America and Europe. Often a condition rendered invisible in policy terms because of its problematic association with politically marginalized groups, the social study of sickle cell has been neglected. This illuminating volume explores the challenges and possibilities for developing a social view of sickle cell, and for improving the quality of lives of those living with SCD. Tackling the controversial role of screening and genetics in SCD, the book offers a brief thematic history of approaches to the condition, queries the role of ethnicity and includes a discussion of how the social model of disability can be applied, as well as featuring chapters focusing on athletics, prisons and schools. Bringing together a wide range of original research conducted in the USA, the UK, Ghana and Nigeria, Sickle Cell and the Social Sciences is anchored in the discipline of sociology, but draws upon a diverse range of fields, including public health, anthropology, social policy and disability studies.

This groundbreaking book chronicles the history of sickle cell anemia in the United States, tracing its transformation from an "invisible" malady to a powerful, yet contested, cultural symbol of African American pain and suffering. Set in Memphis, home of one of the nation's first sickle cell clinics, Dying in the City of the Blues reveals how the recognition, treatment, social understanding, and symbolism of the disease evolved in the twentieth century, shaped by the politics of race, region, health care, and biomedicine. Using medical journals, patients' accounts, black newspapers, blues lyrics, and many other sources, Keith Wailoo follows the disease and its sufferers from the early days of obscurity before sickle cell's "discovery" by Western medicine; through its rise to clinical, scientific, and social prominence in the 1950s; to its politicization in the 1970s and 1980s. Looking forward, he considers the consequences of managed care on the politics of disease in the twenty-first century. A rich and multilayered narrative, Dying in the City of the Blues offers valuable new insight into the African American experience, the impact of race relations and ideologies on health care, and the politics of science, medicine, and disease.

Sickle cell disease (SCD) is a genetic condition that affects approximately 100,000 people in the United States and millions more globally. Individuals with SCD endure the psychological and physiological toll of repetitive pain as well as side effects from the pain treatments they undergo. Some adults with SCD report reluctance to use health care services, unless as a last resort, due to the racism and discrimination they face in the health care system. Additionally, many aspects of SCD are inadequately studied, understood, and addressed. Addressing Sickle Cell Disease examines the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT). This report explores the current guidelines and best practices for the care of patients with SCD and recommends priorities for programs, policies, and research. It also discusses limitations and opportunities for developing national SCD patient registries and surveillance systems, barriers in the healthcare sector associated with SCD and SCT, and the role of patient advocacy and community engagement groups.

The Human Genome Project has spawned a Renaissance of research faced with the daunting expectation of personalized medicine for individuals with sickle cell disease in the Genome Era. This book offers a comprehensive and timeless account of emerging concepts in clinical and basic science research, and community concerns of health disparity to educate professionals, students and the general public about meeting this challenging expectation. Contributions from physicians, research scientists, scientific administrators and community workers make Renaissance of Sickle Cell Disease Research in the Genome Era unique among the catalogue of books on this genetic disorder.Part 1 offers detailed review of the National Heart Lung and Blood Institute's leadership role in funding sickle cell research, as well as developing progressive research initiatives and the predicted impact of the Human Genome Project. Part 2 gives an account of several clinical research perspectives based on the Cooperative Study of Sickle Cell Disease. These include recommendations for newborn screening, pain management, stroke, transfusion therapy and pediatric and adult healthcare. Part 3 offers novel insights into basic science research progress and the impact of the Human Genome Project on the direction of hemoglobinopathy research, including hemoglobin switching, bone marrow transplantation and gene therapy. Part 4 engages the reader in a culture-based discussion of the stigma attached to sickle cell disease in the African American community and the apprehensions about genetic research in this community. It concludes with a global perspective on sickle cell disease from African, European and American experiences. For readers seeking a definitive account of sickle cell disease appropriate for students, researchers and community workers, this collaborative effort is an ideal textbook./a

Although it strikes individuals from a variety of backgrounds, sickle cell anemia has always been known as a "black" disease in America. In the Blood argues that ever since the discovery in 1910 and subsequent scientific analysis of the disease, sickle cell anemia has been manipulated to serve social ends-as a tool for securing white identity and a way to establish a hierarchy based on European heritage. Tapper shows how sickle cell anemia was used to promote the superiority of racial purity, to characterize the black body as contaminated, and even to support the notion that modern humans evolved from multiple origins.

In the 1980s, a research team led by Parisian scientists identified several unique DNA sequences, or haplotypes, linked to sickle cell anemia in African populations. After casual observations of how patients managed this painful blood disorder, the researchers in question postulated that the Senegalese type was less severe. The Enculturated Gene traces how this genetic discourse has blotted from view the roles that Senegalese patients and doctors have played in making sickle cell "mild" in a social setting where public health priorities and economic austerity programs have forced people to improvise informal strategies of care. Duana Fullwiley shows how geneticists, who were fixated on population differences, never investigated the various modalities of self-care that people developed in this context of biomedical scarcity, and how local doctors, confronted with dire cuts in Senegal's health sector, wittingly accepted the genetic prognosis of better-than-expected health outcomes. Unlike most genetic determinisms that highlight the absoluteness of disease, DNA haplotypes for sickle cell in Senegal did the opposite. As Fullwiley demonstrates, they allowed the condition to remain officially invisible, never to materialize as a health priority. At the same time, scientists' attribution of a less severe form of Senegalese sickle cell to isolated DNA sequences closed off other explanations of this population's measured biological success. The Enculturated Gene reveals how the notion of an advantageous form of sickle cell in this part of West Africa has defined--and obscured--the nature of this illness in Senegal today. Some images inside the book are unavailable due to digital copyright restrictions.

“Within the pages of Uncertain Suffering it becomes all too clear that race, class, and age converge to define a powerful triple blow that guarantees both subtle and outrageously obvious health disparities. Rouse moves gracefully from the subjective pain of adolescent patients in crisis, to the compassionate yet distanced professionalism of health care specialists, to the level of national policy, revealing a clinical world fraught with contradictions over how best to treat black, and, all too often, underclass children in pain. Uncertain Suffering will make a big splash within anthropology.”—Lesley Sharp, Barnard College “Uncertain Suffering will have a unique place in medical anthropology, public health scholarship, and the social sciences of health. It involves a layered and deeply philosophical approach to the limits of the role/ responsibility of modern American medicine to address the suffering of African American patients.”—Rayna Rapp, New York University

“An engaging, insightful, and challenging call to examine both the rhetoric and reality of innovation and inclusion in science and science policy.” —Daniel R. Morrison, American Journal of Sociology Stem cell research has sparked controversy and heated debate since the first human stem cell line was derived in 1998. Too frequently these debates devolve to simple judgments—good or bad, life-saving medicine or bioethical nightmare, symbol of human ingenuity or our fall from grace—ignoring the people affected. With this book, Ruha Benjamin moves the terms of debate to focus on the shifting relationship between science and society, on the people who benefit—or don’t—from regenerative medicine and what this says about our democratic commitments to an equitable society. People’s Science uncovers the tension between scientific innovation and social equality, taking the reader inside California’s 2004 stem cell initiative, the first of many state referenda on scientific research, to consider the lives it has affected. Benjamin reveals the promise and peril of public participation in science, illuminating issues of race, disability, gender, and socio-economic class that serve to define certain groups as more or less deserving in their political aims and biomedical hopes. Ultimately, Ruha Benjamin argues that without more deliberate consideration about how scientific initiatives can and should reflect a wider array of social concerns, stem cell research—from African Americans’ struggle with sickle cell treatment to the recruitment of women as tissue donors—still risks excluding many. Even as regenerative medicine is described as a participatory science for the people, Benjamin asks us to consider if “the people” ultimately reflects our democratic ideals.