Mapping Fate: A Memoir of Family, Risk, and Genetic Research (review)

This remarkable book interweaves a family memoir with the story of the scientific quest for the gene for Huntington’s disease. The author is a historian who has written a widely acclaimed two-volume biography of Emma Goldman and currently is writing a social history of Huntington’s disease. She embarked on Mapping Fate in 1983, when scientists discovered the genetic marker for the disease and seemed on the brink of making even more dramatic breakthroughs. Wexler was well poised to chronicle their accomplishments: her father had established the Hereditary Disease Foundation, which supported the research, and her sister played a prominent role in it. Medical historians can learn much from her account of the unusual collaboration between scientists and nonscientists. They also will appreciate Wexler’s reminder that scientific progress often marches unevenly, with digressions and reversals as well as its well-heralded successes.

The book contributes to the growing historical literature based on what Arthur Kleinman has dubbed “illness narratives.” ¹ Wexler was in her mid-twenties when she learned that her maternal grandfather and uncles had died from Huntington’s, that her mother had been diagnosed with the disease, and that both she and her sister therefore had a 50 percent chance of contracting it. With courageous openness, Wexler examines the various nonmedical factors that shaped her family’s response to this harrowing disease. As she writes, “Unresolved angers and resentments from the past often got displaced onto the disease, while the disease, in turn, cast its toxic shadow on multiple aspects of the family history, even before we knew of its existence” (p. xix).

In addition, Wexler addresses two issues that are central to contemporary medical historians. One is the power and prestige of medical knowledge. Mapping Fate exhibits little of the skepticism about science that some medical historians embrace. Watching her mother’s continual decline, Wexler had good reason to pin her hopes on the production of scientific knowlege—but she ultimately rejected one form of that knowledge. In a riveting chapter that has obvious relevance for current controversies about HIV testing, prenatal diagnosis, and the human genome project, she discusses how she and her sister decided not to take a test to determine whether they carried the Huntington’s gene. They might have been expected to make the opposite choice: they had condemned the family’s secrecy about Huntington’s during their childhood; the test resulted from the research their father had launched; and the media and some physicians and counselors stressed the advantages of prediction and control. But the sisters not only feared the emotional consequences of a positive result, they also realized that the new technology created merely the illusion of control; it could not predict when symptoms would appear, and physicians remained powerless to cure the disease or retard its progress.

Wexler also explores the meaning of being at risk. A family diagnosis of Huntington’s disease highlights what many of us deny throughout our lives—namely, the fragility of all human existence. Compelled to confront her risk status, Wexler made it a source of insight. She notes that “Huntington’s poses stark questions about the meanings of certainty and uncertainty and what it means to occupy a ‘third space’ outside the categories of either—or that we conventionally use to organize experience” (pp. xiv–xv). When she rejected the test her family had helped to produce, she realized the extent to which she had come to terms with ambiguity and uncertainty.

Eloquent, compelling, and raising a host of critical issues, this book deserves to be widely read.