Joan H. Marks, who was a pioneer in genetic counseling, the practice of helping patients understand their risk of an inherited medical condition, and who developed it into a full-blown profession, died on Sept. 14 at her home in Manhattan. She was 91.
Her son Dr. Andrew Marks said the cause was heart failure.
Ms. Marks was the director of the graduate program in genetic counseling at Sarah Lawrence College in Bronxville, N.Y., for 26 years. When she started, in 1972, the program, the first in the nation to educate genetic counselors, was three years old.
During her tenure, she developed it into the largest such program in the country, which it remains, and helped to establish a new health care field. Today there are thousands of certified genetic counselors in the United States — professionals trained in both genetics and counseling who help patients and their families confront a variety of inherited conditions.
But when Ms. Marks began, doctors were skeptical that anyone without a medical degree could understand the intricacies of genetics. So the role of talking with patients and their families about inherited disorders and potential birth defects was often left to nurses and others.
Ms. Marks saw a glaring need for skilled counselors who could explain genetics in plain language to patients, listen with empathy and guide them through a complex web of emotional, ethical and legal choices.
“We created the concept that a non-physician genetic counselor could not only assume some of the responsibilities of physicians in terms of medical genetic care, but also would do a better job because they were better trained in genetics and in counseling,” Ms. Marks told The New York Times in 1994.
Genetic testing was once primarily used for diagnosing genetic defects in fetuses and newborns, but by the mid-1990s it was able to predict the risk of developing a wide variety of adult conditions, including breast cancer and ovarian cancer. Today, more advanced tests can detect more than 6,000 genetic disorders, according to the Genetic Disease Foundation. Many are fatal or severely debilitating, and the need for trained counselors to help patients understand the test results has increased exponentially.
“Joan recognized the need for professionals to help people cope with the anxiety of living with the results of their genetic tests,” Mary-Claire King, a geneticist at the University of Washington in Seattle and a research partner of Ms. Marks, said in a phone interview.
“Women who learned they carried devastating mutations needed to decide what to do to save their own lives,” Ms. King said. (A prominent example is the actress Angelina Jolie, who has a family history of ovarian cancer and who, as a preventive measure, had a double mastectomy and later had her ovaries and fallopian tubes removed.)
“She taught her students how to empower their patients,” Ms. King added. “Her standards define the field.”
Joan Harriet Rosen was born on Feb. 4, 1929, in Portland, Maine. Her mother, Lillian (Morrison) Rosen, played the piano for