Historians of medical genetics have long been preoccupied with the field's relationship to eugenics. That focus is certainly understandable given the manifest institutional, personal, and ideological entanglements of “reform eugenics” with medical genetics during the 1950s and 1960s, as well as continuing controversies concerning the eugenic content of such medical-genetic technologies as prenatal and pre-implantation genetic diagnosis. Lindee notes that research in the field has resulted in more diagnostic tests than it has effective treatments for disease and indeed claims that selective abortion following prenatal diagnosis remains the “primary intervention” associated with genetic medicine (p. 202). Thus even she can not entirely escape the eugenics issue. Nevertheless, the focus of her welcome new book is on aspects of the history of the field that have received much less attention from scholars, such as the central roles played by patient and parent advocacy groups in setting research agendas, financing studies, and providing critical information. Moments of truth is not a systematic history of genetic medicine but an analysis of five key developments occurring between 1955 and 1975—two decades during which human genetics was transformed from an institutional and intellectual backwater into a research frontier. Each case study explores a different facet of the field. Thus the routinization of newborn testing for phenylketonuria (PKU) following the 1960 development of a blood test suitable for hospital-based mass screening is used to investigate the rise of public health genetics, and Victor McKusick's studies of the Old Order Amish, the construction of human pedigrees and rise of mapping studies more generally. Similarly, early research on human chromosomes is used to elucidate how standardization has transformed concepts and practices in genetic medicine, the development of the “twin method”, a variety of issues in the rise of human behaviour genetics, and the history of research on familial dysautonomia, the role of social organization and technology in both creating and eliminating a genetic disease. Organizing the book around five quite disparate cases could have resulted in something of a hodgepodge. However, the studies are linked by several themes. Thus running through the discussion of each case are reflections on the question of how nearly all disease came to be understood as genetic disease. Lindee explores how this idea became crystallized during the 1960s and 1970s in texts, scientific and clinical practice, and public policy, and she considers what it meant and continues to mean for researchers, patients, and the public at large. In general, I found her arguments convincing, but I have a small quibble with the effort to fit the newborn screening case into this periodization. In the 1960s and 1970s, as Lindee herself notes, PKU was generally characterized as a treatable form of mental retardation, with genetics barely figuring in legislative and other debates surrounding screening, nor were many geneticists initially enthusiastic about efforts to mandate the test. It was only in the 1980s that PKU came to be commonly viewed as a success of genetic medicine, a reframing that in my view followed and served to validate the trend described in this book (a trend encapsulated by Abby Lippmann's term “geneticization”). A second theme uniting the individual cases concerns the varied types of work and workers involved in medical-genetic research. Thus Lindee argues that the production of scientific knowledge is a community project involving not just researchers, but also research subjects, patients and their families. She emphasizes that non-scientists have often functioned as active research collaborators, as crucial sources of knowledge and funds, and sometimes as validators of researchers' claims. Thus, in her account, scientific authority is more dispersed than it is often assumed to be and forms of labour not usually characterized as “scientific research” are shown to be integral to the enterprise and made visible. The resulting insight into the structure and organization of contemporary biomedicine is one of the chief contributions of this original and important new book.
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