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The story within : personal essays on genetics and identity / edited by Amy Boesky.

  • Boesky, Amy
  • Books

About this work


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.


Baltimore : The Johns Hopkins University Press, [2013]

Physical description

viii, 270 pages ; 23 cm


Includes index.

Bibliographic information

Includes bibliographical references and index.


Machine generated contents note: pt. ONE Finding Out: Genetics and Ideas of Self -- 1.Undiagnosed / Kelly Cupo -- 2.Driving North / Charlie Pierce -- 3.Collateral Damage / Kate Preskenis -- 4.In Samarra / Amy Boesky -- 5.The Unnumbered / Alice Wexler -- pt. TWO Intervening: Living with Genetic Difference -- 6.Of Helices, HIPAA, Hairballs... and Humans / Misha Angrist -- 7.The Power of Two: Two Sisters, Two Genes, and Two New Chances at Life / Isabel Stenzel Byrnes -- 8.Permission to Look: Documenting the BRCA Mutation / Joanna Rudnick -- 9."Why Would You Be Wantin' to Know?" Not Talking about Schizophrenia in Ireland / Patrick Tracey -- 10.Help Wanted / Michael Downing -- 11.Community and Other Ordinary Miracles / Mara Faulkner -- pt. THREE Passing Down: Genetics and Family -- 12.String Theory, or How One Family Listens through Deafness / Jennifer Rosner -- 13.What If / Laurie Strongin -- 14.The Long Arm / Clare Dunsford -- 15.Lettuce and Shoes / Christine Kehl O'Hagan --
Contents note continued: 16.Dear Dr. Frankenstein: Creation Up Close / Emily Rapp.


  • English

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    History of Medicine AOT.AH


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  • 9781421410968
  • 1421410966