The Story Within: Personal Essays on Genetics and Identity

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 ...

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The Story Within: Personal Essays on Genetics and Identity

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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, Alice Wexler

Johns Hopkins University Press

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Editorial Reviews

PsychCentral - Patrick Tracey

If there were an All-Star Team for memoirists struggling with genetic misfortune... The Story Within would surely be it.

Nursing Times - Jane Brown

Thought provoking, moving and extremely interesting.

Metapsychology - Dena Hurst

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.

From the Publisher

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).

Johns Hopkins University Press

Gesnerus - Adrien Guignard

The Story Within est un collectif réussi. Il s’efforce avec bonheur, rigueur et respect de concilier quelque chose comme l’orignal (singulier) et l’originaire (universel), le littéral (de l’ADN) et le littéraire (des textes réunis).

Library Journal
10/15/2013
Boesky (English, Boston Coll.; What We Have) has compiled a compelling collection of essays that address the experiences of many who have genetically based illnesses. These narratives touch mainly on the authors' concerns about having a genetic disorder, such as family relations and uncertainty about the future, as well as the illness itself. The rise of genetic medicine now allows us to learn if we might be prone to a particular disorder, forcing us to confront the issues it raises before the disease manifests (e.g., preventative mastectomy in the face of a BRCA mutation). 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.—Eric D. Albright, Tufts Univ. Lib., Boston
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Product Details

  • ISBN-13: 9781421410968
  • Publisher: Johns Hopkins University Press
  • Publication date: 10/10/2013
  • Pages: 280
  • Sales rank: 1,442,910
  • Product dimensions: 5.90 (w) x 8.90 (h) x 0.70 (d)

Meet the Author

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

Johns Hopkins University Press

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