As one of few general surveys of genetic counseling, Telling Genes: The Story of Genetic Counseling in America offers an accessible history of the profession and its evolution within the history of medicine in America. Author Alexandra Minna Stern locates genetic counseling at the nexus of bioethics, medical genetics, technology, disability studies, reproduction, and parenting, thus establishing genetic counseling's near-universal significance as a subject for both medical and lay communities. Because genetic counseling has the potential to touch all of us at some point in our lives, Stern rightly insists that its unsavory origins in the American Eugenics movement demand greater scrutiny and visibility, especially as these connections influenced (and continue to influence) its practices, ideals, and goals.
The book is meticulously researched and scholarly, but also very readable: Stern writes for a broad audience, one that might include the genetic counselor, the student of disability studies or medicine, the historian of science, the future parent, and the physician. Specialists in medicine, counseling, and disability studies will find Stern's treatment of complex issues balanced and insightful; students and general audiences will find her clear prose and succinct explication of genetic terms and concepts inviting. Telling Genes offers all readers an opportunity to reconsider the history of genetic counseling (including the "ugly side of hereditarian thinking") at a moment when the field and its practitioners are confronting the challenges of twenty-first century medical technologies and increasing genomic knowledge.
Methodologically, Stern's narrative history brings together archival data, interviews with genetic counselors, correspondence between counselors and their clients, and images and photographs to illustrate the emergence of genetic counseling as a profession. Stern's research materials are abundant and impressive: papers and historical documents from universities with longstanding programs in genetic counseling (Sarah Lawrence, University of California Berkeley, Rutgers, University of Minnesota); medical records from Johns Hopkins Medical Institutions and Wake Forest Baptist Medical Center; conference proceedings and grant records from March of Dimes; and personal archives and letters from physicians and genetic counselors. In addition, Stern features the personal experiences of many of the counselors she interviewed, underscoring the fact that many of the physicians and practitioners who established the field did so as a result of genetic disorders or diagnoses that affected the lives of their children, siblings, and parents.
The narrative format also allows Stern to present events and conversations without much commentary or judgment. Inherent tensions and conflicts pull the reader as they did the pioneers of the field, making for an engaging but at times uncomfortable read. For example, though Stern is clearly critical of the eugenic foundations of genetic counseling, she does not pillory individual physicians, counselors, or practitioners for the sins of an era. She acknowledges troubling ideologies and principles throughout the text—and spares no criticism for overt racists and eugenicists—but she also takes pains to situate individuals within their cultural moments.
Multiple (and often opposing) perspectives are represented with care and impartiality. For example, in one debate about the use of genetic testing as prevention, Stern gives voice to many groups, including those who view disability as a purely social issue, those who wish to distinguish between "disability" and "debilitating impairment," and those who wish to eliminate all forms of what they believe to be suffering. Overall, this objectivity is productive; when all perspectives are presented, readers can grasp the full scope of the issue. However, there are moments when such objectivity can be disheartening, as some readers may wish for the full-throated repudiation of antiquated, ableist, and eugenic arguments Stern offers in her first book, Eugenic Nation: Faults and Frontiers of Better Breeding in Modern America.
The first two chapters work together to situate genetic counseling in American medical history, identifying landmark events from post-World War II to the present. By way of introduction, Stern briefly summarizes the development of the field, outlines the typical work of a genetic counselor, and then complicates the history of the profession by revealing its ties to eugenics. The second chapter, on genetic risk, revisits these moments and identifies points at which perceptions of risk shift alongside the evolution of genetic counseling. Of particular interest is the neo-eugenic relationship between technology and the accuracy of risk calculations: Stern notes that by 1970, advancements in testing prompted one physician to announce that genetic counseling was no longer a "guessing game" but instead "a preventative medicine situation."
Even so, many physicians and practitioners disagreed with the belief that genetic counseling should be part of a broader program of social engineering or the prevention of disability. The resulting debate over the proposed roles and responsibilities of genetic counselors emerges in the remaining chapters. In the third chapter, entitled "Race," Stern considers the debate within the racialized politics of "population control" and "genetic difference," as well as in similarly troubling attempts at "racial matching" for adoptions. Chapter Four examines the relationship between genetic counseling and disability and uses Down syndrome as a focal point. Here, Stern presents a range of conflicting attitudes about genetic diseases and disorders—within both medical and lay communities—and underscores the many (enduring) obstacles to consensus. By contrasting the early neo-eugenic and paternalistic goals of the medical community to reduce the "negative impact" of Down syndrome and other hereditary conditions with the later efforts and advocacy of parents and disability activists, Stern suggests a powerful and lasting shift in counseling from prevention to adaptation and support. Stern continues this assertion in the next chapter, "Women," wherein she recounts the creation of additional master's level counseling programs and the increased presence of female counselors. These programs offered training in psychology and patient care in addition to genetics, which softened the more clinical approach of early counseling. In addition, Stern reports that a majority of the first generation of counselors were highly intelligent women with family responsibilities and a keen desire to help others. As a result, Stern asserts, "genetic counseling crystallized into a helping profession" and can now be categorized along with other feminized, service-based jobs that require "emotional labor."
The brevity of these chapters—just one is over 25 pages—belies their richness and complexity, and Stern's masterful blend of first-person anecdotes, interviews, statistics, and correspondence could give readers the impression that the history of genetic counseling is tidy and contained. This is not the case, of course, and readers who take advantage of Stern's thorough bibliography and notes will appreciate the author's efforts to compress 60-plus years of genetic counseling into a manageable history. Similarly, the neat division of topics into chapters—risk, race, disability, women—creates silos that threaten to isolate subjects and identities that are often closely related or overlapping. While careful readers will note the connections in bibliographic notes and cross-references, others with less familiarity might miss the many significant intersections of disability, eugenics, race, gender, and bioethics.
These concerns about intersectionality are largely mitigated in the final two chapters, where Stern addresses the topics of bioethics and prenatal screening. Both chapters serve to bring early chapters into conversation with each other, and both examine the significant shift in focus from neo-eugenic outcomes of genetic testing (prevention, risk assessment, the reduction or elimination of disability, the termination of a pregnancy) to the implications and current uses of diagnostic technologies. In Chapter Six, Stern draws comparisons between Rogerian counseling and "nondirectiveness," focusing on perceived benefits of a "client-centered" approach. Initially lauded as unconditionally supportive and non-invasive, "nondirectiveness" was later seen to diminish the counselor's authority and to create distance between counselor and client. According to Stern, counselors now recognize the need to relay salient information about risk and to engage directly with their clients as they consider their choices. The final chapter, "Prenatal Diagnosis," charts the rapid rise of prenatal testing, especially amniocentesis, and its impact on genetic counseling. In a rare editorial moment, Stern suggests that increasing demands for prenatal testing and the growth of commercial "direct-to-consumer" tests give genetic counselors an opportunity to "shake off the stereotype" that genetic counseling is akin to pregnancy termination. Stern insists: "If genetic counselors become even more disability-friendly…this stereotype could disappear once and for all," allowing counselors to provide ethical, patient-centered care in the complex realm of genomic medicine.
In short, this accessible history of genetic counseling in America offers an excellent overview of the issues embedded within the profession to a wide range of readers. General audiences will appreciate Stern's clear prose and engaging narrative; scholars and members of the genetic counseling and medical communities will respect her evenhanded but pointed analysis of the profession's eugenic baggage. Throughout Telling Genes, Stern highlights the efforts of scholars, parents, and activists who have pushed the profession to take note of its embedded values and histories. Even so, many readers in disability studies may wish for more: Telling Genes supports and expands the goals of activism and awareness, but it lacks a powerful call to action or demand for change. However, in revealing the history and cultural roots of genetic counseling, Stern has produced an invaluable resource for other scholars and activists to continue their own work.