August 10, 2015

Alexandra Minna Stern, “Telling Genes: The Story of Genetic Counseling in America” (Johns Hopkins University Press, 2012)

1 hour 10 minutes

Due in part to lobbying efforts on behalf of the human genome project, human genes tend to be thought of in light of the present–genetic components of human disease and differential risks associated with genetic individuals–before the future, what gets passed on to later generations. However, public understanding of genetics did not merely radiate from laboratories, as Alexandra Minna Stern‘s book, Telling Genes: The Story of Genetic Counseling in America (Johns Hopkins University, 2012) shows. Before the age of genetic sequencing and mass-produced tests, physicians from various specialties provided genetic counseling on an ad-hoc basis, most of which took the form of reproductive advice. Medical genetics had only been established in the 1960s, with the shadow of eugenics still looming large over a field that was now more inclined toward description of heritable conditions than prescription of reproductive sanctions and sterilization. The founding of the first master’s program in genetic counseling in 1969 established the institutional and intellectual basis for a new kind of health care professional, one that would further the reorientation of medical genetics toward patient-centered care.

Stern’s book connects this emergent professional identity to the broader history of genetic and eugenic programs in the United States. So, while this is a history focused on how the distinct profession of genetic counseling emerged as an alternative to traditional medical authority, it is firmly situated within the conflicts that have persistently plagued the development and application of human genetic knowledge. This orientation toward fundamental tensions is reflected by the book’s structure. While she begins with a historical overview of genetic counseling as a profession, the rest of the book is organized around issues; genetic risk and the questionable efficacy of disease apprehension; the politics of race inherent in population knowledge; the fundamental role played by disability in the understanding of inherited disorders; the gender politics of genetic counseling as a challenge to the medical establishment; therapeutic ethics; and the emergence of prenatal testing.

This highly readable whirlwind tour through the complex ethical and historical landscape of genetic counseling rewards those new to the history of genetics by virtue of its accessibility, along with those more familiar through the vast amounts of new source material it blends in seamlessly with broader frames. If you enjoy this book, look out for a new edition of Eugenic Nation, Stern’s first book on the politics of eugenics.

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