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  • Moments of Truth in Genetic Medicine
  • Alice Wexler
Susan Lindee . Moments of Truth in Genetic Medicine. Baltimore: Johns Hopkins University Press, 2005. xii + 270 pp. Ill. $40.00 (0-8018-8175-7).

While the historiography of eugenics and genetics has grown enormously over the past two decades, genetic medicine, which Susan Lindee traces to the "long 1960s," has just begun to attract the attention of historians (p. 1). Lindee's pioneering study, drawing on sociological, anthropological, and feminist perspectives on science, technology, and medicine, offers a superb model for a multidisciplinary history that captivates as well as persuades.

Lindee organizes her project around the metaphor of a "moment of truth," defined as the moment when "a given phenomenon is classified or categorized or placed in a narrative that explains it"—that is, in a formal scientific text or into scientific and medical practice (p. 2). She locates her iconic "moment" in the 1950s, when investigators discovered that infants born with phenylketonuria, or PKU, could avoid mental retardation through a special diet, thereby demonstrating that genetic disorders were amenable to environmental intervention and setting the stage for the expansion of prenatal testing and the emergence of public health genetics. Building on the work of Diane Paul, Lindee emphasizes the ambiguities and uncertainties in this widely promoted genetic success story, uncertainties that she sees as integral to genetic testing generally. But she also explores how institutional frameworks, disciplinary differences, and the personal and emotional [End Page 797] knowledge of key actors such as diagnostic test inventor Robert Guthrie, who had relatives with the condition, helped shape the unfolding research.

Lindee's emphasis on the emotional, social, cultural, and folk knowledge of research subjects and investigators alike threads through all her narratives, and constitutes one of the great strengths of the book. Those participating in the production of knowledge are "much more dispersed than is generally admitted," she suggests (p. 25). Illuminating this point is her account of Victor McKusick's fieldwork among the Amish in the 1950s and 1960s, and his 1966 volume Mendelian Inheritance in Man, whose mapping and cataloging imperative she sees as a precursor to the Human Genome Project. Lindee's analysis especially foregrounds the social and emotional connections required for the construction of pedigrees, connections usually made invisible in formal scientific papers. Rather than treating the Amish as passive objects of scrutiny, she explores the ways in which McKusick and his colleagues depended upon the social knowledge and cultural practices of their Amish collaborators—although the Amish were not, as Lindee astutely points out, part of the intended audience for their publications.

Other chapters examine different kinds of collaborations. A study of twin research emphasizes the ways in which twins' own knowledge regarding their zygosity—whether they were identical or fraternal—proved a critical resource for investigators, helping to further the expansion of post–World War II behavioral genetics. A chapter on the development of cytogenetics stresses the ways in which negotiations involved in standardizing unruly chromosomes contributed to the larger processes of standardization essential to the growth of genetic knowledge. The story of familial dysautonomia—a rare disease that became visible only in the 1940s with the invention of antibiotics, and that may disappear with the advent of predictive testing—unfolds as a wrenching tale in which parental desire and intimate knowledge played a critical role in spurring and even shaping scientific research.

All of these moments of truth, Lindee argues persuasively, were experienced by many different people, and contributed to a fundamental shift that took place between 1955 and 1975, when human genetics moved from an obscure scientific outpost to the center of biological and biomedical research and almost all disease became defined as genetic. Lindee is leery of the global inequalities and corporate interests that have also helped fuel the expansion of genomic medicine, and she warns that germ-line genetic intervention could have unexpected catastrophic consequences. Nonetheless she takes a "faintly optimistic" view of current developments (p. 25)—in part, I believe, because of her vision of the role of parents, patients, and genetic-disease advocacy groups in constructing genetic knowledge, and her empathy with their hopes for better treatments and cures...

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