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Telling Genes

Author: Alexandra Minna Stern
Publisher: JHU Press
ISBN: 1421407485
Size: 36.67 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

Das Gen

Author: Siddhartha Mukherjee
Publisher: S. Fischer Verlag
ISBN: 3104033277
Size: 74.12 MB
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Großartig, fesselnd und folgenreich: Pulitzer-Preisträger Siddhartha Mukherjee erzählt meisterhaft die Geschichte der Entzifferung des Mastercodes, der unser Menschsein bestimmt. Als Siddhartha Mukherjee seinen Bestseller ›Der König aller Krankheiten‹ beendet hatte, machte er sich auf eine Reise in die indische Heimat. Er besucht Cousin Moni, der an Schizophrenie leidet – wie auffällig viele seiner Verwandten. Fasziniert beginnt Mukherjee sich mit der Geschichte der Gene zu beschäftigen: Von den Erbsenkreuzungen Mendels bis zur neuesten Gen-Bearbeitungs-Methode CRISPR schreibt Mukherjee den spannenden Roman einer wissenschaftlichen Suche und verwebt ihn mit der Geschichte seiner Familie. Das große Buch eines begnadeten Erzählers und Arztes, das gewaltige Panorama einer machtvollen Entdeckung, die man nun endlich versteht. Packend und einzigartig. »Wer wissen will, was es bedeutet, Mensch zu sein, sollte dieses Buch lesen.« Boston Globe »Lesen Sie dieses Buch, so werden Sie auf die Zukunft bestens vorbereitet sein. « Sunday Times »Meisterhaft aufgebaut, wunderbar erzählt [...] Mukherjee ist ein Genie darin, zutiefst menschliche Geschichten hinter abstrakten Ideen zu entdecken.« Andrew Solomon, Washington Post »Eine inspirierende und ungemein bewegende Lektüre.« San Francisco Chronicle

The Pku Paradox

Author: Diane B. Paul
Publisher: JHU Press
ISBN: 1421411326
Size: 79.76 MB
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In a lifetime of practice, most physicians will never encounter a single case of PKU. Yet every physician in the industrialized world learns about the disease in medical school and, since the early 1960s, the newborn heel stick test for PKU has been mandatory in many countries. Diane B. Paul and Jeffrey P. Brosco’s beautifully written book explains this paradox. PKU (phenylketonuria) is a genetic disorder that causes severe cognitive impairment if it is not detected and treated with a strict and difficult diet. Programs to detect PKU and start treatment early are deservedly considered a public health success story. Some have traded on this success to urge expanded newborn screening, defend basic research in genetics, and confront proponents of genetic determinism. In this context, treatment for PKU is typically represented as a simple matter of adhering to a low-phenylalanine diet. In reality, the challenges of living with PKU are daunting. In this first general history of PKU, a historian and a pediatrician explore how a rare genetic disease became the object of an unprecedented system for routine testing. The PKU Paradox is informed by interviews with scientists, clinicians, policymakers, and individuals who live with the disease. The questions it raises touch on ongoing controversies about newborn screening and what happens to blood samples collected at birth. -- M. Susan Lindee, University of Pennsylvania

Wert Der Familie

Author: Isabel Heinemann
Publisher: Walter de Gruyter GmbH & Co KG
ISBN: 3110463695
Size: 68.11 MB
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Die Analyse von Normveränderungen auf dem Feld der Familienwerte eignet sich besonders gut, um zu einem breiteren Verständnis gesellschaftlichen Wandels zu gelangen. Dies liegt erstens daran, dass die Familie während des gesamten 20. Jahrhunderts als wichtigste Mikroeinheit der Gesellschaft nach dem Individuum und als zentrale Instanz der Wertevermittlung an die nächste Generation galt. Öffentliche Debatten um die Familie, ihre Strukturen und ihre Werte unterstreichen stets deren Bedeutung für die Gesellschaft. Zweitens entfaltete das Familienideal der weißen „Middle Class" im 20. Jahrhundert eine prägende Wirkung für alle US-Amerikaner/innen. Es diente als Projektionsfläche von Integrations- und Aufstiegshoffnungen, inspirierte aber auch Diversifizierungs- und Abgrenzungsstrategien. Quellen der Studie sind insbesondere die nationale Tages- und Wochenpresse, Grundsatzentscheide des Supreme-Court und ihre Begründungen, Statements von Präsidenten und ihrer Stäbe, Ratgeber-Literatur und zeitgenössische wissenschaftliche Publikationen sowie Veröffentlichungen religiöser Organisationen und sozialer Bewegungen. Als zentrale Untersuchungsachsen dienen die Kategorien „Race, Class, and Gender" sowie die Frage nach der Gültigkeit des sozialwissenschaftlichen Postulats eines „Wertewandels".

Normative And Pragmatic Dimensions Of Genetic Counseling

Author: Joseph B. Fanning
Publisher: Springer
ISBN: 331944929X
Size: 32.73 MB
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This book provides an elaboration and evaluation of the dominant conceptions of genetic counseling as they are accounted for in three different models: the teaching model; the psychotherapeutic model; and the responsibility model. The elaboration of these models involves an identification of the larger traditions, visions and theories of communication that underwrite them; the evaluation entails an assessment of each model’s theses and ultimately a comparison of their adequacy in response to two important concerns in genetic counseling: the contested values of non-directiveness and the recognition of differences across perspectives, with special focus on how religious and spiritual beliefs of patients are coordinated with the networks of meaning in genetics. Several insights are made explicit in this project through the work of Robert Brandom. Brandom’s deontic scorekeeping model demonstrates how dialogue is at the root of grasping a conceptual content. Against this backdrop, professional communications such as genetic counseling can be seen as late developments in linguistic practices that have structural challenges. Brandom’s model reminds us that the professional needs the client’s understanding to grasp conceptual content in a particular context.

Imperfect Pregnancies

Author: Ilana Löwy
Publisher: JHU Press
ISBN: 1421423642
Size: 44.85 MB
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In the 1960s, thanks to the development of prenatal diagnosis, medicine found a new object of study: the living fetus. At first, prenatal testing was proposed only to women at a high risk of giving birth to an impaired child. But in the following decades, such testing has become routine. In Imperfect Pregnancies, Ilana Löwy argues that the generalization of prenatal diagnosis has radically changed the experience of pregnancy for tens of millions of women worldwide. Although most women are reassured that their future child is developing well, others face a stressful period of waiting for results, uncertain prognosis, and difficult decisions. Löwy follows the rise of biomedical technologies that made prenatal diagnosis possible and investigates the institutional, sociocultural, economic, legal, and political consequences of their widespread diffusion. Because prenatal diagnosis is linked to the contentious issue of selective termination of pregnancy for a fetal anomaly, debates on this topic have largely centered on the rejection of human imperfection and the notion that we are now perched on a slippery slope that will lead to new eugenics. Imperfect Pregnancies tells a more complicated story, emphasizing that there is no single standardized way to scrutinize the fetus, but there are a great number of historically conditioned and situated approaches. This book will interest students, scholars, health professionals, administrators, and activists interested in issues surrounding new medical technologies, screening, risk management, pregnancy, disability, and the history and social politics of women’s bodies. -- Joanna Latimer, University of York, author of The Gene, the Clinic, and the Family: Diagnosing Dysmorphology, Reviving Medical Dominance

The Story Within

Author: Amy Boesky
Publisher: JHU Press
ISBN: 1421410974
Size: 46.87 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

Das Gen

Author: Siddhartha Mukherjee
Publisher:
ISBN: 9783596032358
Size: 10.33 MB
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Das Egoistische Gen

Author: Richard Dawkins
Publisher: Springer-Verlag
ISBN: 3642553915
Size: 65.17 MB
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p”Ein auch heute noch bedeutsamer Klassiker“ Daily Express Sind wir Marionetten unserer Gene? Nach Richard Dawkins ́ vor über 30 Jahren entworfener und heute noch immer provozierender These steuern und dirigieren unsere von Generation zu Generation weitergegebenen Gene uns, um sich selbst zu erhalten. Alle biologischen Organismen dienen somit vor allem dem Überleben und der Unsterblichkeit der Erbanlagen und sind letztlich nur die "Einweg-Behälter" der "egoistischen" Gene. Sind wir Menschen also unserem Gen-Schicksal hilflos ausgeliefert? Dawkins bestreitet dies und macht uns Hoffnung: Seiner Meinung nach sind wir nämlich die einzige Spezies mit der Chance, gegen ihr genetisches Schicksal anzukämpfen.

Encyclopedia Of Human Genetics And Disease

Author: Evelyn B. Kelly
Publisher: ABC-CLIO
ISBN: 0313387133
Size: 78.12 MB
Format: PDF, ePub
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This two-volume encyclopedia examines the history, characteristics, causes, and treatment of genetic disease, as well as the science of genetics itself. * Illustrations and photographs * An informative timeline of genetic study advancements * An annotated list of websites and helpful books