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Author: Amy Boesky
ISBN : B00FGTGORS
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Format: PDF
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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 "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, Isabel Stenzel Byrnes, Laurie Strongin, Patrick Tracey, Alice Wexler
Books with free ebook downloads available Free The Story Within [Kindle Edition]
- File Size: 1327 KB
- Print Length: 280 pages
- Publisher: JHUP; 1 edition (October 10, 2013)
- Sold by: Amazon Digital Services, Inc.
- Language: English
- ASIN: B00FGTGORS
- Text-to-Speech: Enabled
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- Lending: Not Enabled
- Amazon Best Sellers Rank: #477,058 Paid in Kindle Store (See Top 100 Paid in Kindle Store)
- #46
in Kindle Store > Kindle eBooks > Nonfiction > Professional & Technical > Medical eBooks > Basic Science > Genetics
- #46
in Kindle Store > Kindle eBooks > Nonfiction > Professional & Technical > Medical eBooks > Basic Science > Genetics
Free The Story Within
Amy Boesky has put together an excellent group of essays about genetic disorders from 15 different contributors, all dealing with issues such as alzheimer's, cancer, deafness, schizophrenia and more.
The book is a bit hard to follow, but the decisions involved with genetic disorders are complex, so in that regard it's good for the reader to think about them.. to get tested or not, who to tell, whether to have kids, etc.
Patrick Tracey's essay, "WHY WOULD YOU BE WANTIN' TO KNOW?" Not talking about schizophrenia in Ireland is maybe the best in the book.
A good and worthwhile read for anyone wanting to think more deeply on genetics and how we as a society deal with it's varying effects.
By Joel Holtz
VINE VOICE
This collection of personal essays puts a human face on genetics discourse on disease-causing mutations, a discourse that tends to become dryly statistical and abstract except to those fated to actually carry a genetic inheritance for cystic fibrosis, blindness, breast cancer, or something else. The stories are personal, heart-wrenching, and inspiring as they reveal lives, struggles, family cultures, and courageous decisions made by each writer. The different voices and different lives are a great strength of this anthology, which is altogether powerful and moving. Highly recommended.
By Priscilla Long
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