The Story Within

Personal Essays on Genetics and Identity

Buch | Softcover

280 Seiten

2014
Johns Hopkins University Press (Verlag)
978-1-4214-1096-8 (ISBN)

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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.

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.

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

Acknowledgments
Introduction
Part I: Finding Out: Genetics and Ideas of Self
Chapter 1. Undiagnosed
Chapter 2. Driving North
Chapter 3. Collateral Damage
Chapter 4. In Samarra
Chapter 5. The Unnumbered
Part II: Intervening: Living with Genetic Difference
Chapter 6. Of Helices, HIPAA, Hairballs . . . and Humans
Chapter 7. The Power of Two: Two Sisters, Two Genes, and Two New Chances at Life
Chapter 8. Permission to Look: Documenting the BRCA Mutation
Chapter 9. "Why Would You Be Wantin' to Know?" Not Talking about Schizophrenia in Ireland
Chapter 10. Help Wanted
Chapter 11. Community and Other Ordinary Miracles
Part III: Passing Down: Genetics and Family
Chapter 12. String Theory, or How One Family Listens Through Deafness
Chapter 13. What If
Chapter 14. The Long Arm
Chapter 15. Lettuce and Shoes
Chapter 16. Dear Dr. Frankenstein: Creation Up Close
Epilogue
Notes
List of Contributors
Index

Verlagsort	Baltimore, MD
Sprache	englisch
Maße	152 x 229 mm
Gewicht	386 g
Themenwelt	Medizin / Pharmazie ► Medizinische Fachgebiete
	Studium ► 2. Studienabschnitt (Klinik) ► Humangenetik
	Studium ► Querschnittsbereiche ► Geschichte / Ethik der Medizin
	Studium ► Querschnittsbereiche ► Prävention / Gesundheitsförderung
	Recht / Steuern ► EU / Internationales Recht
ISBN-10	1-4214-1096-6 / 1421410966
ISBN-13	978-1-4214-1096-8 / 9781421410968
Zustand	Neuware