Telling Genes

Author: Alexandra Minna Stern
Publisher: JHU Press
ISBN: 1421407485
Format: PDF, Kindle
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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
Format: PDF, ePub, Docs
Download Now
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'

Telling Genes

Author: Alexandra Minna Stern
Publisher: Johns Hopkins University Press
ISBN: 9781421406688
Format: PDF, Mobi
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Drawing from archival records, patient files, and oral histories, Stern presents the fascinating story of the growth of genetic counseling practices, principles, and professionals.

Eugenic Nation

Author: Alexandra Minna Stern
Publisher: Univ of California Press
ISBN: 0520960653
Format: PDF, ePub, Mobi
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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.

Life Histories of Genetic Disease

Author: Andrew J. Hogan
Publisher: JHU Press
ISBN: 1421420740
Format: PDF, ePub
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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.

The Story Within

Author: Amy Boesky
Publisher: JHU Press
ISBN: 1421410974
Format: PDF, ePub
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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

Counseling About Cancer

Author: Katherine A. Schneider
Publisher: John Wiley & Sons
ISBN: 1118119916
Format: PDF, Mobi
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Important scientific discoveries and ever-changing guidelines for how to identify and manage patients with hereditary cancer syndromes are constantly evolving. This Third Edition of Counseling About Cancer is completely updated and expanded to feature five entirely new chapters on breast cancer, colon cancer, other solid tumors, clients and families, and genetic test results and follow-up. This is the only reference and clinical book on the market for cancer genetics counselors and other healthcare providers who must quickly assimilate complex and ever-changing data on the hereditary risk for cancer.

Am I My Genes

Author: Robert Klitzman
Publisher: OUP USA
ISBN: 0199837163
Format: PDF
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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.

Fixing the Poor

Author: Molly Ladd-Taylor
Publisher: JHU Press
ISBN: 1421423723
Format: PDF
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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.

Cultural and Ethnic Diversity

Author: Nancy L. Fisher
Publisher: JHU Press
ISBN: 9780801853463
Format: PDF, ePub
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"The first global attempt by several experts from diverse backgrounds to address specific ethnic and cultural beliefs and their implications for genetic services. It is long overdue!" -- Alliance Alert