The Story Within

The Story Within

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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 qhealthq is or whose life has value. They write hoping to expand conversations about genetics and identitya€”to deepen debate and generate questions. They or their families are affected by Huntingtona€™s disease, Alzheimera€™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 Oa€™Hagan, Charlie Pierce, Kate Preskenis, Emily Rapp, Jennifer Rosner, Joanna Rudnick, Anabel Stenzel (deceased), Isabel Stenzel Byrnes, Laurie Strongin, Patrick Tracey, Alice Wexler -- Alexandra Stern, University of Michigan, author of Telling Genes: The Story of Genetic Counseling in AmericaRita Charon, M.D., Ph.D., Program in Narrative Medicine at Columbia University, author of Narrative Medicine: Honoring the Stories of IllnessPatrick TraceyIntroduction. Amy Boesky The bodyisneverasinglephysical thing so much asaseriesofattitudes towards it. LENNARD J. DAVIS, a€œTheEnd of Identity Politicsa€ This collection grew out of the conviction that personal narrative reveals a great deal about the ... Tothatend, Iaskedcontributors to write personal essays about whatanbsp;...


Title:The Story Within
Author: Amy Boesky
Publisher:JHU Press - 2013-10-02
ISBN-13:

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