The Origins and History of Genetic Counseling in the U.S.

FAIN: FA-50073-04

Alexandra M. Stern
Regents of the University of Michigan (Ann Arbor, MI 48109-1382)

Genetic information is expanding at a tremendous rate, challenging our ability to thoroughly grapple with its social consequences. One of the principal ways that information about genetic conditions and disease susceptibility is conveyed to ordinary Americans is through genetic counseling, a practice combining medicine, psychology, and risk assessment that has steadily evolved over the past 50 years. Despite the growing presence of genetic counseling in hospitals, clinics, and other medical venues, we know very little about its origins and transformation from a marginalized activity practiced at a few institutes in the 1950s to a ubiquitous facet of biomedicine. I propose to research and write the first comprehensive history of genetic counseling in the United States. My examination will trace this history from the marriage counseling centers established in the 1930s, to the heredity clinics founded at hospitals and universities in the 1940s and 1950s, to the certificate programs in genetic counseling launched in the late 1960s and 1970s, and will conclude with an assessment of genetic counseling in the era of the Human Genome Project. This project, which is patently concerned with ethical issues, changing definitions of disability and normality, and the social and cultural assumptions and effects of genetic knowledge, fits under the Humanities and Healthcare Special Initiative supported jointly by the NEH and the Agency for Healthcare Research and Quality.

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