Overview
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, and Alice Wexler.
Full Product Details
Author: Amy Boesky (Associate Professor, Boston College)
Publisher: Johns Hopkins University Press
Imprint: Johns Hopkins University Press
Dimensions:
Width: 15.20cm
, Height: 1.70cm
, Length: 22.90cm
Weight: 0.386kg
ISBN: 9781421410968
ISBN 10: 1421410966
Pages: 280
Publication Date: 26 January 2014
Recommended Age: From 13
Audience:
College/higher education
,
Professional and scholarly
,
Tertiary & Higher Education
,
Professional & Vocational
Format: Paperback
Publisher's Status: Active
Availability: Available To Order
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Reviews
A compelling collection of essays that address the experiences of many who have genetically based illnesses... These pieces can comfort those in similar situations; inform friends, relatives, and caregivers; enlighten health providers; and help us all better understand how others experience the world in which we live. VERDICT Recommended for those who are touched by genetic disorders or are interested in health in the modern world. Library Journal If there were an All-Star Team for memoirists struggling with genetic misfortune... The Story Within would surely be it. -- Patrick Tracey PsychCentral Thought provoking, moving and extremely interesting. -- Jane Brown Nursing Times
A compelling collection of essays that address the experiences of many who have genetically based illnesses... These pieces can comfort those in similar situations; inform friends, relatives, and caregivers; enlighten health providers; and help us all better understand how others experience the world in which we live. VERDICT Recommended for those who are touched by genetic disorders or are interested in health in the modern world. Library Journal If there were an All-Star Team for memoirists struggling with genetic misfortune... The Story Within would surely be it. -- Patrick Tracey PsychCentral
Author Information
Amy Boesky is an associate professor of English at Boston College and author of What We Have: A Memoir.
