Download telling genes the story of genetic counseling in america in pdf or read telling genes the story of genetic counseling in america in pdf online books in PDF, EPUB and Mobi Format. Click Download or Read Online button to get telling genes the story of genetic counseling in america in pdf book now. This site is like a library, Use search box in the widget to get ebook that you want.



Telling Genes

Author: Alexandra Minna Stern
Publisher: JHU Press
ISBN: 1421407485
Size: 61.28 MB
Format: PDF, Docs
View: 5374
Download and Read
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

The Pku Paradox

Author: Diane B. Paul
Publisher: JHU Press
ISBN: 1421411326
Size: 29.64 MB
Format: PDF, Docs
View: 6612
Download and Read
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

Das Gen

Author: Siddhartha Mukherjee
Publisher:
ISBN: 9783596032358
Size: 44.56 MB
Format: PDF, Mobi
View: 2785
Download and Read

Normative And Pragmatic Dimensions Of Genetic Counseling

Author: Joseph B. Fanning
Publisher: Springer
ISBN: 331944929X
Size: 41.45 MB
Format: PDF, ePub
View: 3559
Download and Read
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: 66.28 MB
Format: PDF, ePub, Docs
View: 7568
Download and Read
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

A Companion To The History Of American Science

Author: Georgina M. Montgomery
Publisher: John Wiley & Sons
ISBN: 1119072220
Size: 12.57 MB
Format: PDF, ePub, Mobi
View: 6161
Download and Read
A Companion to the History of American Science offers a collection of essays that give an authoritative overview of the most recent scholarship on the history of American science. Covers topics including astronomy, agriculture, chemistry, eugenics, Big Science, military technology, and more Features contributions by the most accomplished scholars in the field of science history Covers pivotal events in U.S. history that shaped the development of science and science policy such as WWII, the Cold War, and the Women’s Rights movement

Ein Guter Tag Zum Leben

Author: Lisa Genova
Publisher: BASTEI LÜBBE
ISBN: 3732512789
Size: 35.44 MB
Format: PDF, ePub, Mobi
View: 830
Download and Read
Als Joe erfährt, dass er an der seltenen Krankheit Chorea-Huntington leidet, ist er 44 Jahre alt. Wenn es gut läuft, bleiben ihm noch zehn Jahre. Jahre, in denen er die Kontrolle über seinen Körper mehr und mehr verlieren wird. Wie jedes seiner vier Kinder muss auch Katie befürchten, die Krankheit ihres Vaters geerbt zu haben. Gewissheit könnte ein Gentest bringen. Doch kann sie tatsächlich mit dem Wissen leben, das der Test ans Licht bringt?

Still Alice

Author: Lisa Genova
Publisher: BASTEI LÜBBE
ISBN: 3838701178
Size: 16.31 MB
Format: PDF
View: 5579
Download and Read
Stellen Sie sich vor, all Ihre Erinnerungen - gute, schlechte, schmerzhafte, leidenschaftliche - werden nach und nach aus Ihrem Gedächtnis gelöscht und Sie können absolut nichts dagegen tun ... Anrührend, beängstigend und doch voller Hoffnung: Mein Leben ohne Gestern erzählt die bewegende Geschichte einer Frau, die sich von der eigenen Vergangenheit verabschieden muss, um einer Zukunft entgegenzusteuern, in der vieles nicht mehr da ist und doch etwas bleibt.

Molekulare Humangenetik

Author: Tom Strachan
Publisher: Spektrum Akademischer Verlag
ISBN: 9783827414939
Size: 64.78 MB
Format: PDF
View: 2334
Download and Read
Die vorliegende 3. Auflage der Molekularen Humangenetik ist völlig neu überarbeitet - unter Berücksichtigung der Entdeckungen, die im Zuge und in der Folge des Human Genome Project gemacht wurden. Die einführenden Kapitel (Teil I) beschreiben die Grundlagen wie DNA-Struktur und -Funktion, Chromosomen, Zellen und Entwicklung, Stammbaumanalysen und grundlegende Techniken im Labor. In Teil II werden die verschiedenen Genomsequenzierungsprojekte und die dadurch ermöglichten Einblicke in Organisation, Expression, Variabilität und Evolution des menschlichen Genoms gezeigt. Die Kartierung, Identifizierung und Diagnose der Ursachen von mendelnden und komplexen Krankheiten sowie Krebs ist Schwerpunkt von Teil III. Der letzte Teil gibt Ausblicke auf die funktionelle Genomik und Bioinformatik, auf Tiermodelle und Therapien. Das Buch soll eine Brücke bilden zwischen den grundlegenden Lehrbüchern und der Forschungsliteratur, sodass auch Interessierte mit relativ wenig Hintergrundwissen zum Thema die neuesten Forschungsergebnisse lesen und beurteilen können.

The Story Within

Author: Amy Boesky
Publisher: JHU Press
ISBN: 1421410974
Size: 34.19 MB
Format: PDF
View: 5116
Download and Read
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