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The Story Within

Personal Essays on Genetics and Identity

Author: Amy Boesky  

The Story Within
Paperback

A thought-provoking collection of personal essays explores complex issues surrounding genetic identity.

Shares experiences of living with genetic disorders. This title includes stories that 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.

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PRODUCT INFORMATION

Summary

A thought-provoking collection of personal essays explores complex issues surrounding genetic identity.

Shares experiences of living with genetic disorders. This title includes stories that 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.

Read more

Description

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.

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Critic Reviews

“When medical students really feel that they understand genetics... let them read The Story Within and be brought down to earth with a bang. I know I was.”

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 For those who have traveled a similar path and who have faced genetic illnesses, these stories can be a source of comfort. These stories can also help inform and educate and generate much needed dialogue about health and body norms. The narratives in The Story Within are a reminder that every life has value. -- Dena Hurst Metapsychology The Story Within is a true success of a collection. With joy, rigor, and respect, it strvies to reconcile something like the original (one-of-a-kind) and the originator (universal), the literal (DNA) and the literary (collected essays). Original review below -- Adrien Guignard Gesnerus The Story Within est un collectif reussi. Il s'efforce avec bonheur, rigueur et respect de concilier quelque chose comme l'orignal (singulier) et l'originaire (universel), le litteral (de l'ADN) et le litteraire (des textes reunis). -- Adrien Guignard Gesnerus

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About the Author

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

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More on this Book

In The Story Within, authors 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 identityto deepen debate and generate questions. Whether they or their families are affected by Huntingtons disease, Alzheimers disease, cancer, genetic deafness or blindness, schizophrenia, cystic fibrosis, Tay-Sachs, hypertrophic cardiomyopathy, fragile X, or Fanconi anemia, their stories remind us that genetic health is complicated, dynamic, and above all, deeply personal.

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Product Details

Publisher
Johns Hopkins University Press
Published
26th January 2014
Pages
280
ISBN
9781421410968

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