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Relates the cultural history of cancer and examines society's reaction to the disease through a century of American life.
In this book the author examines the question of the compatibility of politics, policy-making, and professional work. Based on nineteen case studies of organizations, Hoffman looks at "what happened" as doctors and planners set out to redistribute services to minorities and the poor between 1960 and 1980.
In American politics, medical innovation is often considered the domain of the private sector. Yet some of the most significant scientific and health breakthroughs of the past century have emerged from government research institutes. The U.S. National Cancer Institute (NCI) is tasked with both understanding and eradicating cancer—and its researchers have developed a surprising expertise in virus research and vaccine development. An Ungovernable Foe examines seventy years of federally funded scientific breakthroughs in the laboratories of the NCI to shed new light on how bureaucratic organizations nurture innovation. Natalie B. Aviles analyzes research and policy efforts around the search for a viral cause of leukemia in the 1960s, the discovery of HIV and the development of AIDS drugs in the 1980s, and the invention of the HPV vaccine in the 1990s. She argues that the NCI transformed generations of researchers into innovative public servants who have learned to balance their scientific and bureaucratic missions. These “scientist-bureaucrats” are simultaneously committed to conducting cutting-edge research and stewarding the nation’s investment in cancer research, and as a result they have developed an unparalleled expertise. Aviles demonstrates how the interplay of science, politics, and administration shaped the NCI into a mission-oriented agency that enabled significant breakthroughs in cancer research—and in the process, she shows how organizational cultures indelibly stamp scientific work.
In this book, Shell, himself a victim of polio, offers an inspired analysis of the disease. Part memoir, part cultural criticism and history, part meditation on the meaning of disease, Shell's work combines the understanding of a medical researcher with the sensitivity of a literary critic. He deftly draws a detailed yet broad picture of the lived experience of a crippling disease as it makes it way into every facet of human existence.
For over a hundred years, millions of Americans have joined together to fight a common enemy by campaigning against diseases. In Common Enemies, Rachel Kahn Best asks why disease campaigns have dominated a century of American philanthropy and health policy and how the fixation on diseases shapes efforts to improve lives. Combining quantitative and qualitative analyses in an unprecedented history of disease politics, Best shows that to achieve consensus, disease campaigns tend to neglect stigmatized diseases and avoid controversial goals. But despite their limitations, disease campaigns do not crowd out efforts to solve other problems. Instead, they teach Americans to give and volunteer and build up public health infrastructure, bringing us together to solve problems and improve our lives.
Between 1990 and 1993, breast cancer activism became a significant political movement. The issue began to receive extensive media attention, and federal funding for breast cancer research jumped dramatically. Describing the origins of this surge in interest, Maureen Hogan Casamayou attributes it to the emergence of politically potent activism among breast cancer survivors and their supporters. Exploring the creation and development of the National Breast Cancer Coalition (NBCC), she shows how many of its key leaders were mobilized by their own traumatic experiences with the disease and its treatments. Casamayou details the NBCC’s meteoric rise and impressive lobbying efforts, explaining how—in contrast to grassroots movements founded by dedicated individuals—the coalition grew from the simultaneous efforts of a network of women who invested their time, energy, money, and professional skills in the fight for increased funding for breast cancer research. This multiple leadership—or collective entrepreneurialism, says Casamayou—was crucial to the NBCC’s success framing the issue in the minds of the public and policymakers alike.
Human genetic technology has advanced rapidly in recent years to the point where amniocentesis is commonplace and in vitro fertilization has been successful. On the horizon looms the specter of human cloning and genetic engineering, raising a storm of new moral and ethical questions. These questions, asserts the author, are not the only ones to be considered; the impact and role of public policy are equally critical. What part should the state play in human genetic intervention? To what extent does a democratic society have the duty to take steps to reduce genetic disease and improve the quality of life through genetic engineering? If society has such responsibility, at what stage does societal good preempt individual rights? What is society's obligation toward future generations and is genetic manipulation justifiable on these grounds? After surveying the state of the art, the author grapples with these questions, contending that decisions ultimately will not be based on ethical and moral grounds –they will be fought out in the political arena.