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:   In stock  
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Table of Contents

"Acknowledgments Introduction Part I: Finding Out: Genetics and Ideas of Self Chapter 1. Undiagnosed Chapter 2. Driving North Chapter 3. Collateral Damage Chapter 4. In Samarra Chapter 5. The Unnumbered Part II: Intervening: Living with Genetic Difference Chapter 6. Of Helices, HIPAA, Hairballs . . . and Humans Chapter 7. The Power of Two: Two Sisters, Two Genes, and Two New Chances at Life Chapter 8. Permission to Look: Documenting the BRCA Mutation Chapter 9. ""Why Would You Be Wantin' to Know?"" Not Talking about Schizophrenia in Ireland Chapter 10. Help Wanted Chapter 11. Community and Other Ordinary Miracles Part III: Passing Down: Genetics and Family Chapter 12. String Theory, or How One Family Listens Through Deafness Chapter 13. What If Chapter 14. The Long Arm Chapter 15. Lettuce and Shoes Chapter 16. Dear Dr. Frankenstein: Creation Up Close Epilogue Notes List of Contributors Index"

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

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

Author Information

Amy Boesky is an associate professor of English at Boston College and author of What We Have: A Memoir.

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