Arches. Photo by Daniel Chia
HOPES: Huntington's Outreach Project for Education, at Stanford
Feb
26
2013

“Mapping Fate” by Alice Wexler

Published: 1995
Length: 321 pages
Summary: In ”Mapping Fate: A Memoir of Family, Risk, and Genetic Research”, Alice Wexler reflects on her personal and academic experiences with Huntington’s disease. Wexler and her sister, Nancy, watch as their mother slowly deteriorates after her HD diagnosis in her 50s, while they are confronted with their new at-risk statuses. Then Nancy, motivated by HD’s constant presence in her life, joins forces with her impassioned father to organize scientists to find the gene and potential therapies for HD. Wexler details the decades-long process to find the gene, all while intertwining this research with her and Nancy’s struggles with reproductive decisions and, ultimately, whether or not to get tested once the HD gene is found.
This book addresses a variety of questions that could apply to people at risk for HD, family members of patients with HD, scientists, and academic scholars interested in the implications of HD. It explores what it means to be a woman at risk for HD, especially in light of having potentially received the gene maternally. The politics behind fundraising and researching are closely analyzed, as many often assume these two activities are fairly straightforward when closely connected to a serious disease. Wexler gives a firsthand account of the decline of a loved one with HD, evaluating her and her family’s rage, grief, and love as her mother’s death approaches. Most critically, this book repeatedly brings up the choices of whether or not to have children if one is at risk and whether or not to get tested for the gene.
CMB 02/26/2013