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Mary-Claire King, PhD Pays Tribute to the Late Joan H. Marks, Pioneer of Genetic Counseling

King and Jessica Mandell reflect on the legacy of the late BCRF investigator

Joan H Marks, our beloved teacher, research partner, and friend, died September 14 at her home in Connecticut. She was 91 years old.

In the 1970s, Joan created the field of modern genetic counseling, based on her experiences as a psychiatric social worker in New York hospitals. She realized the critical role to be played by professionals trained both in therapy and then-modern genetics. To fill this void, she directed and transformed the program in genetic counseling at Sarah Lawrence College. For the next two decades, genetic counselors worked primarily with parents of children with devastating congenital disorders.

In the mid-1990s, Joan re-created genetic counseling. The discoveries of BRCA1 and BRCA2 led her to expand the role of the genetic counselor to include advising breast cancer patients and their families on risks due to inherited mutations in these genes. Conversations with her husband, Paul Marks, and with Dr. Larry Norton led her also to believe that genetic counselors could have a critical role in patient-centered research to understand the impact of these genes on women's lives.

Joan and Evelyn Lauder had been friends since they were both young professional women in 1950s New York City. In 1993, Evelyn had founded BCRF, in partnership with Dr. Norton and with the enthusiastic support of Joan and Paul. In 1996, Evelyn and Joan went for a walk in Central Park and talked about Joan's vision for patient-centered research. Evelyn embraced the idea.  BCRF awarded Joan and me the first Jill Rose Award, donated to BCRF by Marshall Rose in honor of his late wife, Jill.

With the Jill Rose Award as seed money, Joan and I began the New York Breast Cancer Study, The next year, Joan and I received our first BCRF grant, hired Jessica Mandell as a genetic counselor immediately upon her graduation from Sarah Lawrence, and together with oncologists, geneticists, and genetic counselors throughout the New York City region, carried out the New York Breast Cancer Study. Results from that project and its sister projects have saved the lives of many women. The project continues to flourish, with continuous BCRF support.

Joan created a profession and changed our lives. We will miss her terribly.

Mary-Claire King, PhD and Jessica Mandell
September 16, 2020

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