In Mapping Fate, Alice Wexler tells the story of a family at risk for a hereditary, incurable, fatal disorder: Huntington's disease, once called Huntington's chorea. That her mother died of the disease, that her own chance of inheriting it was fifty-fifty, that her sister and father directed much of the extraordinary biomedical research to find the gene and a cure, make Wexler's story both astonishingly intimate and scientifically compelling.
Alice Wexler's graceful and eloquent account goes beyond the specifics of Huntington's disease to explore the dynamics of family secrets, of living at risk, and the drama and limits of biomedical research. Mapping Fate will be a touchstone for anyone with questions about genetic illness and the possibilites and perils of genetic testing.
Mapping Fate A Memoir of Family, Risk, and Genetic Research
About the Book
Reviews
"A fabulous read. . . . a book about love, scientific research, family fights, duplicity, compassion, courage and pain. It is brilliantly written by one of the principal characters in this real-life drama. You'll be riveted."—Ann LandersTable of Contents
"That Disorder": An Introduction
THE BODY IN QUESTION
1. After Woods Hole
2. Silent Subjects
3. 1968
4. Dreaming Chorea
CHOREA STORIES
5. Nedda and Hope
6. "Tainted by Smog and Hollywood"
7. The Test for "HD-ness"
8. A Double Death
MAPS FOR MISREADING
9. "Leaping Gazellelike Through the Genome"
10. Tristes Tropiques
11. G-8
12. Testing Fate
GENETIC DESTINATIONS
13. "The Single Most Important Piece of Information"
14. Repeat Sequences
Afterword
Notes
A Note on Sources
Interviews
Acknowledgments
Index