Moments of Truth in Genetic Medicine (review)

We are just beginning to understand the promise of genomic technology for advances in science, medicine, and public health, and this technology's concomitant impact on social, cultural, and economic institutions. In the coming years, as historians begin to debate the technological and social origins of the genomic revolution—an era that stretches roughly from the development of the human genome project in the mid-1980s to the sequencing and interpretation of the human genetic code early in the twenty-first century—we will surely improve our understanding of what are to be the great successes and failures of this scientific revolution. After an initial spate of histories of the project written largely by participants in or journalists covering the genomic revolution, professional historians are beginning to explore topics in the history of genetics and that field's relationship to genomics, and to consider why the genome project has become such a powerful scientific force in our time.

One of the first histories to do this is Susan Lindee's provocative and thoughtful Moments of Truth in Genetic Medicine. Moments examines the "people, institutions, and ideas that facilitated the reconfiguration of human disease in genetic terms in the United States"(204), and explores how this change has helped define the scientific and social boundaries of the genomic age. Lindee, Professor of the History and Sociology of Science at the University of Pennsylvania, is well suited for this task, playing on the strengths of her field, which give her the freedom to both historicize the past and exploit the sociological tools tying past to present.

The "moments of truth" from the title of the book are "the moment when a given phenomenon is classified or categorized or placed in a narrative that explains it" (2). By this, Lindee seems to mean the point when an accumulation of scientific, medical, and folk knowledge becomes common practice in science and medicine, and common parlance, or at least familiar, in the popular culture. The development of scientific and medical knowledge in Lindee's model is dispersed within and outside the scientific community, being simultaneously an act of discovery in both nature and society. Each chapter of the book is a lesson in how these "moments" came to pass. To her credit, Lindee's approach—rooted in ideas drawn from literary theory, cultural history, and science and technology studies—never gets bogged down in the heavy-handed theory and jargon often characteristic of these fields. Furthermore, Lindee makes use of this theory without suffering its sometimes fatal flaw: never does she confuse the biological reality of human disease with its social construction.

The book can be divided into three thematic sections. The first covers the years from the 1950s through the 1970s, examining the rise of public health genetics, the study of genetic disease among the Amish, and the development of a standard cytogenetic scientific vernacular. This is the strongest section of the book, providing interesting examples of how known diseases became labeled as genetic (PKU and Down syndrome) and how doctors, geneticists, and patients together developed an understanding of this new category for disease.

The second section looks at how this new knowledge system shaped two clinical areas. A chapter on behavioral genetics and the use of identical-twin registries illustrates the "expansive, fungible quality of genetic explanations" by showing how the focus of those studies depended upon who was leading them, where they took place, and the methodology utilized (124). A chapter on rare genetic disease (in this case familial dysautonomia) explores the benefits and harms of associating genetic disease with a particular human population (Ashkenazi Jews), and suggests that its scientific and public prominence was driven by a parental support network and by legal issues related to genetic testing. Yet, in a chapter entitled "Jewish Genes," it is surprising that little attention is given to the risk of stigmatization often associated with connecting genes and disease with race and ethnicity. Lindee's discussion of "Jewish Genes" would have benefited from an...