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Telling Genes

Author: Alexandra Minna Stern
Publisher: JHU Press
ISBN: 1421407485
Size: 53.75 MB
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For sixty years genetic counselors have served as the messengers of important information about the risks, realities, and perceptions of genetic conditions. More than 2,500 certified genetic counselors in the United States work in clinics, community and teaching hospitals, public health departments, private biotech companies, and universities. Telling Genes considers the purpose of genetic counseling for twenty-first century families and society and places the field into its historical context. Genetic counselors educate physicians, scientific researchers, and prospective parents about the role of genetics in inherited disease. They are responsible for reliably translating test results and technical data for a diverse clientele, using scientific acumen and human empathy to help people make informed decisions about genomic medicine. Alexandra Minna Stern traces the development of genetic counseling from the eugenics movement of the early twentieth century to the current era of human genomics. Drawing from archival records, patient files, and oral histories, Stern presents the fascinating story of the growth of genetic counseling practices, principles, and professionals. -- Troy Duster, Chancellor's Professor and Senior Fellow, Warren Institute on Law and Social Policy, University of California, Berkeley

Telling Genes

Author: Alexandra Minna Stern
Publisher: JHU Press
ISBN: 1421406675
Size: 73.29 MB
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For sixty years genetic counselors have served as the messengers of important information about the risks, realities, and perceptions of genetic conditions. More than 2,500 certified genetic counselors in the United States work in clinics, community and teaching hospitals, public health departments, private biotech companies, and universities. Telling Genes considers the purpose of genetic counseling for twenty-first century families and society and places the field into its historical context. Genetic counselors educate physicians, scientific researchers, and prospective parents about the role of genetics in inherited disease. They are responsible for reliably translating test results and technical data for a diverse clientele, using scientific acumen and human empathy to help people make informed decisions about genomic medicine. Alexandra Minna Stern traces the development of genetic counseling from the eugenics movement of the early twentieth century to the current era of human genomics. Drawing from archival records, patient files, and oral histories, Stern presents the fascinating story of the growth of genetic counseling practices, principles, and professionals. -- Troy Duster, Chancellor'

Eugenic Nation

Author: Alexandra Minna Stern
Publisher: Univ of California Press
ISBN: 0520960653
Size: 68.33 MB
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First edition, Winner of the Arthur J. Viseltear Prize, American Public Health Association With an emphasis on the American West, Eugenic Nation explores the long and unsettled history of eugenics in the United States. This expanded second edition includes shocking details demonstrating that eugenics continues to inform institutional and reproductive injustice. Alexandra Minna Stern draws on recently uncovered historical records to reveal patterns of racial bias in California’s sterilization program and documents compelling individual experiences. With the addition of radically new and relevant research, this edition connects the eugenic past to the genomic present with attention to the ethical and social implications of emerging genetic technologies.

Am I My Genes

Author: Robert Klitzman
Publisher: OUP USA
ISBN: 0199837163
Size: 15.62 MB
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In this volume, the psychiatrist Robert Klitzman explores how individuals confront the complex issues associated with genetic testing in their daily lives.

Life Histories Of Genetic Disease

Author: Andrew J. Hogan
Publisher: JHU Press
ISBN: 1421420740
Size: 47.73 MB
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Medical geneticists began mapping the chromosomal infrastructure piece by piece in the 1970s by focusing on what was known about individual genetic disorders. Five decades later, their infrastructure had become an edifice for prevention, allowing today’s expecting parents to choose to test prenatally for hundreds of disease-specific mutations using powerful genetic testing platforms. In Life Histories of Genetic Disease, Andrew J. Hogan explores how various diseases were "made genetic" after 1960, with the long-term aim of treating and curing them using gene therapy. In the process, he explains, these disorders were located in the human genome and became targets for prenatal prevention, while the ongoing promise of gene therapy remained on the distant horizon. In narrating the history of research that contributed to diagnostic genetic medicine, Hogan describes the expanding scope of prenatal diagnosis and prevention. He draws on case studies of Prader-Willi, fragile X, DiGeorge, and velo-cardio-facial syndromes to illustrate that almost all testing in medical genetics is inseparable from the larger—and increasingly "big data"–oriented—aims of biomedical research. Hogan also reveals how contemporary genetic testing infrastructure reflects an intense collaboration among cytogeneticists, molecular biologists, and doctors specializing in human malformation. Hogan critiques the modern ideology of genetic prevention, which suggests that all pregnancies are at risk for genetic disease and should be subject to extensive genomic screening. He examines the dilemmas and ethics of the use of prenatal diagnostic information in an era when medical geneticists and biotechnology companies have begun offering whole genome prenatal screening—essentially searching for any disease-causing mutation. Hogan’s focus and analysis is animated by ongoing scientific and scholarly debates about the extent to which the preventive focus in contemporary medical genetics resembles the aims of earlier eugenicists. Written for historians, sociologists, and anthropologists of science and medicine, as well as bioethics scholars, physicians, geneticists, and families affected by genetic conditions, Life Histories of Genetic Disease is a profound exploration of the scientific culture surrounding malformation and mutation.

Fixing The Poor

Author: Molly Ladd-Taylor
Publisher: JHU Press
ISBN: 1421423723
Size: 62.76 MB
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Combining innovative political analysis with a compelling social history of those caught up in Minnesota’s welfare system, Fixing the Poor is a powerful reinterpretation of eugenic sterilization.

The Story Within

Author: Amy Boesky
Publisher: JHU Press
ISBN: 1421410974
Size: 78.54 MB
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The contributors to The Story Within share powerful experiences of living with genetic disorders. Their stories illustrate the complexities involved in making decisions about genetic diseases: whether to be tested, who to tell, whether to have children, and whether and how to treat children medically, if treatment is available. More broadly, they consider how genetic information shapes the ways we see ourselves, the world, and our actions within it. People affected by genetic disease respond to such choices in varied and personal ways. These writers reflect that breadth of response, yet they share the desire to challenge a restricted sense of what "health" is or whose life has value. They write hoping to expand conversations about genetics and identity—to deepen debate and generate questions. They or their families are affected by Huntington’s disease, Alzheimer’s disease, cancer, genetic deafness or blindness, schizophrenia, cystic fibrosis, Tay-Sachs, hypertrophic cardiomyopathy, fragile X, or Fanconi anemia. All of their stories remind us that genetic health is complicated, dynamic, and above all, deeply personal. Contributors Misha Angrist, Amy Boesky, Kelly Cupo, Michael Downing, Clare Dunsford, Mara Faulkner, Christine Kehl O’Hagan, Charlie Pierce, Kate Preskenis, Emily Rapp, Jennifer Rosner, Joanna Rudnick, Anabel Stenzel (deceased), Isabel Stenzel Byrnes, Laurie Strongin, Patrick Tracey, Alice Wexler -- Alexandra Stern, University of Michigan, author of Telling Genes: The Story of Genetic Counseling in AmericaRita Charon, M.D., Ph.D., Program in Narrative Medicine at Columbia University, author of Narrative Medicine: Honoring the Stories of IllnessPatrick Tracey

The Gene Machine

Author: Bonnie Rochman
Publisher: Scientific American / Farrar, Straus and Giroux
ISBN: 0374160783
Size: 48.40 MB
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A sharp-eyed exploration of the promise and peril of having children in an age of genetic tests and interventions Is DNA testing a triumph of modern medicine or a Pandora’s box of possibilities? Is screening for disease in an embryo a humane form of family planning or a slippery slope toward eugenics? And, more practically, how do we navigate the dizzying and expanding array of tests available, with more appearing every day? In The Gene Machine, the award-winning journalist Bonnie Rochman addresses these questions and more, guiding us through the new frontiers of gene technology and how it has forever changed medicine, bioethics, and the factors that shape a family. Rochman takes an authoritative look at the latest hot-button issues in the world of pre- and postnatal testing and tells the stories of women and men struggling to understand the variety of tests and grappling with their results—revelations that are sometimes joyous, sometimes heartbreaking, and often profound. Propelled by human narratives and meticulously reported, The Gene Machine introduces us to scientists working to unlock the secrets of the human genome; gene counselors and spiritual advisers helping parents manage this complex new reality; and, of course, parents themselves, including the author, who glimpse the genetic futures of their children. The Gene Machine is both a scientific road map and a meditation on our power to shape the future, one that gets to the very core of what it means to be human.

Human Genes And Genomes

Author: Leon E. Rosenberg
Publisher: Academic Press
ISBN: 0123852137
Size: 49.56 MB
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In the nearly 60 years since Watson and Crick proposed the double helical structure of DNA, the molecule of heredity, waves of discoveries have made genetics the most thrilling field in the sciences. The study of genes and genomics today explores all aspects of the life with relevance in the lab, in the doctor’s office, in the courtroom and even in social relationships. In this helpful guidebook, one of the most respected and accomplished human geneticists of our time communicates the importance of genes and genomics studies in all aspects of life. With the use of core concepts and the integration of extensive references, this book provides students and professionals alike with the most in-depth view of the current state of the science and its relevance across disciplines. Bridges the gap between basic human genetic understanding and one of the most promising avenues for advances in the diagnosis, prevention and treatment of human disease. Includes the latest information on diagnostic testing, population screening, predicting disease susceptibility, pharmacogenomics and more Explores ethical, legal, regulatory and economic aspects of genomics in medicine. Integrates historical (classical) genetics approach with the latest discoveries in structural and functional genomics

The Gene

Author: Siddhartha Mukherjee
Publisher: Simon and Schuster
ISBN: 1476733538
Size: 10.22 MB
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THE #1 NEW YORK TIMES BESTSELLER A New York Times Notable Book A Washington Post and Seattle Times Best Book of the Year From the Pulitzer Prize-winning author of The Emperor of All Maladies—a fascinating history of the gene and “a magisterial account of how human minds have laboriously, ingeniously picked apart what makes us tick” (Elle). “Dr. Siddhartha Mukherjee dazzled readers with his Pulitzer Prize-winning The Emperor of All Maladies in 2010. That achievement was evidently just a warm-up for his virtuoso performance in The Gene: An Intimate History, in which he braids science, history, and memoir into an epic with all the range and biblical thunder of Paradise Lost” (The New York Times). In this biography Mukherjee brings to life the quest to understand human heredity and its surprising influence on our lives, personalities, identities, fates, and choices. “Mukherjee expresses abstract intellectual ideas through emotional stories…[and] swaddles his medical rigor with rhapsodic tenderness, surprising vulnerability, and occasional flashes of pure poetry” (The Washington Post). Throughout, the story of Mukherjee’s own family—with its tragic and bewildering history of mental illness—reminds us of the questions that hang over our ability to translate the science of genetics from the laboratory to the real world. In riveting and dramatic prose, he describes the centuries of research and experimentation—from Aristotle and Pythagoras to Mendel and Darwin, from Boveri and Morgan to Crick, Watson and Franklin, all the way through the revolutionary twenty-first century innovators who mapped the human genome. “A fascinating and often sobering history of how humans came to understand the roles of genes in making us who we are—and what our manipulation of those genes might mean for our future” (Milwaukee Journal-Sentinel), The Gene is the revelatory and magisterial history of a scientific idea coming to life, the most crucial science of our time, intimately explained by a master. “The Gene is a book we all should read” (USA TODAY).