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  • Telling Genes: The Story of Genetic Counseling in America by Alexandra Minna Stern
  • Stephen Pemberton
Alexandra Minna Stern. Telling Genes: The Story of Genetic Counseling in America. Baltimore: Johns Hopkins University Press, 2012. ix + 238 pp. Ill. $60.00 (cloth, 978-1-4214-0667-1), $25.00 (paperbound, 978-1-4214-0668-8).

Telling Genes recounts “the story” of genetic counseling in the United States. It succeeds in that goal; but more important, Alexandra Stern’s excellent book currently stands as a worthy standard by which other historical writing and claims about the field and practice of genetic counseling can be read. Stern undertook forty-six interviews with practitioners as well as considerable archival work in writing this history. It is a work in the best traditions of the historiography of medicine and public health, and a welcome follow-up to Stern’s award-winning Eugenic Nation. Like her first book, Telling Genes deserves a close reading by anyone interested in the histories of eugenics and human genetics. Genetic counselors are also likely [End Page 489] to embrace the book because Stern has taken stock of their evolving perspectives and dilemmas since the 1960s and rendered this long-neglected group of hardworking health professionals in a balanced, dignified, and thoughtful way.

The history of genetic counseling, on Stern’s account, is the story of the rise of a helping profession that was physician-led in its initial stages (the 1960s) but soon became an increasingly autonomous domain of public health workers by the late 1970s and 1980s. These professional counselors were overwhelmingly college-educated white women whose formal qualifications for their work came through one of the approximately three-dozen master’s programs in genetic counseling founded in the United States since 1969. Pioneers of these programs included Melissa Richter of Sarah Lawrence College and Marian Rivas of Rutgers University. It is also clear from Stern’s rendering that genetic counseling was an outgrowth of the rise of medical genetics in the 1950s and early 1960s; that the profession grew out of the need for clinics to provide more sustained counseling on genetic health than physicians could readily provide. Stern emphasizes the agency of leading counselors in legitimating the professional autonomy of the women trained in genetic counseling master’s programs, and this emphasis seems right on balance.

There are considerable features of Telling Genes that are self-recommending to students of medical genetics; they are evident in Stern’s book chapters and their meticulous attention to the social history of the genetic counseling enterprise in its various facets through the decades. Stern situates race, disability, and gender as important components in story of genetics counseling’s emergence. Among the highlights of this book is Stern’s account of how the American pioneers of medical genetics (Sheldon Reed, James Neel, and Lee Dice) each confronted the ugly legacy of eugenics in the 1950s, yet failed to disentangle themselves entirely from racist assumptions of eugenic practice as they gave counsel on genetic fitness and adoptions. Alternatively, in her chapter on the evolving ethics of the profession, Stern emphasizes how the field’s ruling ethic of nondirectiveness preceded the rise of bioethics to some degree by giving attention to Carl Rogers’s client-centered counseling at Columbia University in the late-1940s as well as Sheldon Reed’s pioneering, albeit quite “equivocal,” approach to counseling at the University of Minnesota in the 1950s (p. 129).

What Stern’s historical perspective onto the discipline and practice of genetic counseling also offers is insight into the less well-known aspects of the counselor’s experience: the marginal status of the counselor’s profession relative to medicine proper, the challenges of working in a field whose origins conjure thoughts of eugenics and genetic discrimination, and the presumed necessity of spending significant amounts of time with a client in a health care system that is increasingly prone to brief, efficient, and cost-effective clinical encounters. Of course, the difficulty of the counselor’s job has also been constantly elevated by the rapid flow of new information being produced by genetic scientists, engineers, and physicians since medical genetics purportedly took flight in the late 1950s...

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