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University of California Press

About the Book

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.

About the Author

Alice Wexler is affiliated with the Center for the Study of Women at University of California, Los Angeles. She is the author of Emma Goldman in America (1984) and Emma Goldman in Exile (1989).

Table 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

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 Landers