race science, eugenics, heredity clinics, paramedical specialties
Over the past four decades, increasing numbers of Americans have faced the prospect of undergoing genetic testing in the context of reproduction, risk assessment, and clinical diagnosis. Paralleling this rise in new genetic technologies, historians of science and medicine have made many important contributions in recent years to our understanding of twentieth-century genetic medicine. Scholars have traced the direct ties between the history of eugenics and the field of medical genetics (Nathaniel Comfort, The Science of Human Perfection, 2012), the recasting of all human disease as genetic, and thus susceptible to technological control (Susan Lindee, Moments of Truth in Genetic Medicine, 2005), the role of prenatal and carrier testing in facilitating the birth of healthy children (Ruth Schwartz Cowan, Heredity and Hope, 2008), and the entanglement of genetic medicine with racial categories and assumptions (Keith Wailoo and Stephen Pemberton, The Troubled Dream of Genetic Medicine, 2006). Largely absent from this [End Page 687] literature, however, has been an in-depth account of the field of genetic counseling as it grew up alongside and played a direct role in shaping the clinical uptake of new genetic technologies.
Alexandra Minna Stern does much to fill this gap in Telling Genes: The Story of Genetic Counseling in America. In this well written and important book, Stern addresses the history of genetic counseling, a profession that has undergone drastic changes during its short history, while still remaining under the “shadow of eugenics” (12). Stern argues, in line with other accounts of postwar genetic medicine, that there has been no distinct transitional moment separating genetic counseling’s interest in population-level improvement of the gene pool from its commitment to autonomous genetic decision-making. Indeed, Stern acknowledges that even in the present era of personalized genomic medicine, genetic counseling retains “palpable links to the ugly side of hereditarian thinking” (3).
Telling Genes examines the history of genetic counseling through a series of chapters organized topically rather than chronologically. Stern’s opening chapter traces the “(eu)genesis of genetic counseling” (18) from the coining of the term genetic counseling in 1947 by Sheldon Reed, a human geneticist who had “complex” views on eugenics (Comfort, 114). As Stern describes, while Reed espoused a client-centered approach to genetic counseling, he reserved truly autonomous decisions for those, mostly white and educated, that he felt were rational enough to make the right choice. Stern goes on to situate the history of genetic counseling in the context of mid-twentieth-century hereditary clinics, the rise of new molecular and chromosomal diagnostic tools in the decades that followed, and the recent proliferation of direct-to-consumer genetic tests. These technologies have reshaped the accuracy with which genetic counselors are able to predict the risk for disease inheritance. As Stern addresses, however, more reliable risk assessments for those trained in genetics do not translate directly to patients, who may interpret risk factors in any number of ways. Genetic counselors thus face the challenge of balancing the mathematical accuracy of genetic findings with the emotional, cultural, and experiential understandings of their clients.
One of the most important and interesting chapters in Telling Genes examines the problematic issue of race in the history of genetic counseling, a field that remains over 90 percent white in professional membership. Looking back to the 1950s and 1960s, Stern describes the central role that genetic counselors, including James Neel, played in assessing the racial characteristics of infants in the course of adoption matching. In this way, she argues, genetic counselors played a direct role in upholding “the racial order in mid-twentieth century America” (63). Similarly complicated has been genetic counseling’s engagement with disability. Stern considers the role of genetic counselors in both stigmatizing and empowering those affected [End Page 688] by genetic disabilities. While counselors have played an active role in promoting the prevention of Down syndrome and other disorders through prenatal genetic testing, they have more...