The Woman Who Walked into the Sea: Huntington's and the Making of Genetic Disease (review)

Alice Wexler's new book, The Woman Who Walked into the Sea: Huntington's and the Making of Genetic Disease, builds on her memoir Mapping Fate (Berkeley: University of California Press, 1995), which blended the histories of her family and Huntington's Disease research. That study drew on bioethics, women's studies, and psychoanalysis while illustrating the value of interdisciplinary collaboration. The Woman Who Walked into the Sea can also be read as a prequel. The first chapter of Mapping Fate began with Wexler's mother, Lenore, who carried the disease (and, with it, the risk that Alice and her sister psychologist Nancy, the prominent Huntington's researcher, might also be affected). But while Mapping Fate occasionally reached back into the past to provide context for the dramatic unfolding of twentieth-century scientific discoveries to which the Wexler family greatly contributed, The Woman Who Walked into the Sea begins in the eighteenth century. Hereditary chorea was already rooted in East Hampton, New York when George Huntington's grandfather, Dr. Abel Huntington, treated the Hedges, a family afflicted with what was then known as St. Vitus's dance. The book begins with the obituary of Phoebe Hedges, whose final steps into the sea were "attributed to her extreme dread of the disorder called St. Vitus's dance, with which she began to be affected and which her mother now has to a great degree" (3). Although the book begins with a description of a hopeless sea, it ends with the birth of a "vast community" of Huntington's sufferers, activists, and researchers who rise to the challenge of "draw[ing] on our knowledge of the past to craft a wise and just future" (186).

Just as Mapping Fate blended memoir with genetic research, Wexler's latest book successfully blends social, biographical, and applied histories of medicine. Divided into three sections, the book begins with a social history, the groundwork for which was laid in Wexler's article in the Bulletin of the History of Medicine 76.3 (2002): "Chorea and Community in a 19^th Century Town." In the article Wexler concluded that, "specific historical circumstances in a community may shape the social meanings of even so severe a disease as Huntington's, and that social integration of the afflicted families may have helped mitigate the suffering of the disease" (495). In book form, Wexler also makes the compelling argument that St. Vitus's case studies in the Hamptons reflect the dawn of eugenics and, with it, the declining acceptance of hereditary disease as a sign of blue-blooded prestige. This well-researched social history is enriched by the two sections that follow.

The second section, "Community/Medicine," describes the process by which "great doctor" George Huntington "invented heredity chorea," as well as the process by which his newfound disease gained acceptance within the medical community. Wexler does an excellent job of describing how a "confluence of elements," (these include: Huntington's social situation in an agricultural community that was attuned to notions of breeding and familiar with the disease he was to describe; his family's medical background; and his diverse educational experiences) contributed to Huntington's "invention," as well as its dissemination, for which the disorder would be named in his honor. While Wexler's account of Huntington's history is comprehensive, it may have been useful for a general reader if Wexler had provided a paragraph or two laying out the current classification, presentation differences, and suspected etiologies of the other movement disorders that had earlier been conflated with Huntington's Disease. The third section, "Medicine/Eugenics/Memory," describes Elizabeth Muncey's eugenics-informed fieldwork, which formed the basis of Charles Davenport's 1916 paper, "Huntington's Chorea in Relation to Heredity and Eugenics." Here Wexler argues that failing to critically interrogate both the data and conclusions of the previous...