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Clinical Trials and the African Person aims to position the African notion of the self/person within the clinical trials context. As opposed to autonomy-based principlism, this other-regarding/communalist perspective is the preferred alternative model. This tactic draws further attention to the inadequacy of the principlist approach particularly in multicultural settings. It also engenders a rethink, stimulates interest, and re-assesses the failed assumptions of universal ethical principles. As a novel attempt that runs against much of the prevailing (Euro-American) intellectual mood, this approach strives to introduce the African viewpoint by making explicit the import of the self in a re-contextualized arena, meaning within the community and a given milieu. Thus, research ethics must go beyond autonomy-based considerations for the individual, to rightly embed him/her within his/her community and the environment.
NATIONAL BOOK CRITICS CIRCLE AWARD WINNER • The first full history of Black America’s shocking mistreatment as unwilling and unwitting experimental subjects at the hands of the medical establishment. No one concerned with issues of public health and racial justice can afford not to read this masterful book. "[Washington] has unearthed a shocking amount of information and shaped it into a riveting, carefully documented book." —New York Times From the era of slavery to the present day, starting with the earliest encounters between Black Americans and Western medical researchers and the racist pseudoscience that resulted, Medical Apartheid details the ways both slaves and freedmen were used in hospitals for experiments conducted without their knowledge—a tradition that continues today within some black populations. It reveals how Blacks have historically been prey to grave-robbing as well as unauthorized autopsies and dissections. Moving into the twentieth century, it shows how the pseudoscience of eugenics and social Darwinism was used to justify experimental exploitation and shoddy medical treatment of Blacks. Shocking new details about the government’s notorious Tuskegee experiment are revealed, as are similar, less-well-known medical atrocities conducted by the government, the armed forces, prisons, and private institutions. The product of years of prodigious research into medical journals and experimental reports long undisturbed, Medical Apartheid reveals the hidden underbelly of scientific research and makes possible, for the first time, an understanding of the roots of the African American health deficit. At last, it provides the fullest possible context for comprehending the behavioral fallout that has caused Black Americans to view researchers—and indeed the whole medical establishment—with such deep distrust.
Hailed by John le Carré as “an act of courage on the part of its author” and singled out for praise by the leading medical journals in the United States and the United Kingdom, The Body Hunters uncovers the real-life story behind le Carré's acclaimed novel The Constant Gardener and the feature film based on it. "A trenchant exposé . . . meticulously researched and packed with documentary evidence" (Publishers Weekly), Sonia Shah's riveting journalistic account shines a much-needed spotlight on a disturbing new global trend. Drawing on years of original research and reporting in Africa and Asia, Shah examines how the multinational pharmaceutical industry, in its quest to develop lucrative drugs, has begun exporting its clinical research trials to the developing world, where ethical oversight is minimal and desperate patients abound. As the New England Journal of Medicine notes, “it is critical that those engaged in drug development, clinical research and its oversight, research ethics, and policy know about these stories,” which tell of an impossible choice being faced by many of the world's poorest patients—be experimented upon or die for lack of medicine.
#1 NEW YORK TIMES BESTSELLER • “The story of modern medicine and bioethics—and, indeed, race relations—is refracted beautifully, and movingly.”—Entertainment Weekly NOW A MAJOR MOTION PICTURE FROM HBO® STARRING OPRAH WINFREY AND ROSE BYRNE • ONE OF THE “MOST INFLUENTIAL” (CNN), “DEFINING” (LITHUB), AND “BEST” (THE PHILADELPHIA INQUIRER) BOOKS OF THE DECADE • ONE OF ESSENCE’S 50 MOST IMPACTFUL BLACK BOOKS OF THE PAST 50 YEARS • WINNER OF THE CHICAGO TRIBUNE HEARTLAND PRIZE FOR NONFICTION NAMED ONE OF THE BEST BOOKS OF THE YEAR BY The New York Times Book Review • Entertainment Weekly • O: The Oprah Magazine • NPR • Financial Times • New York • Independent (U.K.) • Times (U.K.) • Publishers Weekly • Library Journal • Kirkus Reviews • Booklist • Globe and Mail Her name was Henrietta Lacks, but scientists know her as HeLa. She was a poor Southern tobacco farmer who worked the same land as her slave ancestors, yet her cells—taken without her knowledge—became one of the most important tools in medicine: The first “immortal” human cells grown in culture, which are still alive today, though she has been dead for more than sixty years. HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks remains virtually unknown, buried in an unmarked grave. Henrietta’s family did not learn of her “immortality” until more than twenty years after her death, when scientists investigating HeLa began using her husband and children in research without informed consent. And though the cells had launched a multimillion-dollar industry that sells human biological materials, her family never saw any of the profits. As Rebecca Skloot so brilliantly shows, the story of the Lacks family—past and present—is inextricably connected to the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over whether we control the stuff we are made of. Over the decade it took to uncover this story, Rebecca became enmeshed in the lives of the Lacks family—especially Henrietta’s daughter Deborah. Deborah was consumed with questions: Had scientists cloned her mother? Had they killed her to harvest her cells? And if her mother was so important to medicine, why couldn’t her children afford health insurance? Intimate in feeling, astonishing in scope, and impossible to put down, The Immortal Life of Henrietta Lacks captures the beauty and drama of scientific discovery, as well as its human consequences.
Racial and ethnic disparities in health care are known to reflect access to care and other issues that arise from differing socioeconomic conditions. There is, however, increasing evidence that even after such differences are accounted for, race and ethnicity remain significant predictors of the quality of health care received. In Unequal Treatment, a panel of experts documents this evidence and explores how persons of color experience the health care environment. The book examines how disparities in treatment may arise in health care systems and looks at aspects of the clinical encounter that may contribute to such disparities. Patients' and providers' attitudes, expectations, and behavior are analyzed. How to intervene? Unequal Treatment offers recommendations for improvements in medical care financing, allocation of care, availability of language translation, community-based care, and other arenas. The committee highlights the potential of cross-cultural education to improve provider-patient communication and offers a detailed look at how to integrate cross-cultural learning within the health professions. The book concludes with recommendations for data collection and research initiatives. Unequal Treatment will be vitally important to health care policymakers, administrators, providers, educators, and students as well as advocates for people of color.
With a focus on how to improve the effectiveness and cultural competence of clinical services and research, this authoritative volume synthesizes current knowledge on both the physical and psychological health of African Americans today. In chapters that follow a consistent format for easy reference, leading scholars from a broad range of disciplines review risk and protective factors for specific health conditions and identify what works, what doesn't work, and what might work (i.e., practices requiring further research) in clinical practice with African Americans. Historical, sociocultural, and economic factors that affect the quality and utilization of health care services in African American communities are examined in depth. Evidence-based ways to draw on individual, family, and community strengths in prevention and treatment are highlighted throughout. Winner--American Journal of Nursing Book of the Year Award
“Engaging unique sources . . . Londa Schiebinger untangles the complex relationships between European and local physicians, healers, plants, and slavery.” —François Regourd, Université Paris Nanterre In the natural course of events, humans fall sick and die. The history of medicine bristles with attempts to find new and miraculous remedies, to work with and against nature to restore humans to health and well-being. In this book, Londa Schiebinger examines medicine and human experimentation in the Atlantic World, exploring the circulation of people, disease, plants, and knowledge between Europe, Africa, and the Americas. She traces the development of a colonial medical complex from the 1760s, when a robust experimental culture emerged in the British and French West Indies, to the early 1800s, when debates raged about banning the slave trade and, eventually, slavery itself. Massive mortality among enslaved Africans and European planters, soldiers, and sailors fueled the search for new healing techniques. Amerindian, African, and European knowledges competed to cure diseases emerging from the collision of peoples on newly established, often poorly supplied, plantations. But not all knowledge was equal. Highlighting the violence and fear endemic to colonial struggles, Schiebinger explores aspects of African medicine that were not put to the test, such as Obeah and vodou. This book analyzes how and why specific knowledges were blocked, discredited, or held secret. “In this urgent, probing and visually striking volume, Londa Schiebinger, one of the pioneers of feminist and colonial science studies, shifts our understanding of Enlightenment racial attitudes to the domain of the medical, making a vital contribution to the dynamic new wave of research on science and slavery in the Atlantic world.” —James Delbourgo, Rutgers University
In the nineteenth century some scientists argued that women should not be educated because thinking would use energy needed by the uterus for reproduction. The proof? Educated women had a lower birth rate. Today's researchers can only shake their heads at such reasoning. Yet professional journals and the popular press are increasingly criticizing medical research for ignoring women's health issues. Women and Health Research examines the facts behind the public's perceptions about women participating as subjects in medical research. With the goal of increasing researchers' awareness of this important topic, the book explores issues related to maintaining justice (in its ethical sense) in clinical studies. Leading experts present general principles for the ethical conduct of research on womenâ€"principles that are especially important in the light of recent changes in federal policy on the inclusion of women in clinical research. Women and Health Research documents the historical shift from a paternalistic approach by researchers toward women and a disproportionate reliance on certain groups for research to one that emphasizes proper access for women as subjects in clinical studies in order to ensure that women receive the benefits of research. The book addresses present-day challenges to equity in four areas: Scientificâ€"Do practical aspects of scientific research work at cross-purposes to gender equity? Focusing on drug trials, the authors identify rationales for excluding people from research based on demographics. Social and Ethicalâ€"The authors offer compelling discussions on subjectivity in science, the evidence for male bias, and issues related to race and ethnicity, as well as the recruitment, retention, and protection of research participants. Legalâ€"Women and Health Research reviews federal research policies that affect the inclusion of women and evaluates the basis for researchers' fears about liability, citing court cases. Riskâ€"The authors focus on risks to reproduction and offspring in clinical drug trials, exploring how risks can be identified for study participants, who should make the assessment of risk and benefit for participation in a clinical study, and how legal implications could be addressed. This landmark study will be of immediate use to the research community, policymakers, women's health advocates, attorneys, and individuals.