Joan H. Marks, a pioneer in genetic counseling who helped patients understand the risk of a hereditary disease and who grew it into a full-blown profession, died on September 14 at her Manhattan home. She was 91 years old.
Your son Dr. Andrew Marks said the cause was heart failure.
Ms. Marks was the director of the Graduate School in Genetic Counseling at Sarah Lawrence College in Bronxville, New York for 26 years. When it began in 1972, the first program in the nation to train genetic counselors was three years old.
During her tenure, she made it the largest such program in the country and helped set up a new health sector. 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 manage a variety of hereditary diseases.
But when Ms. Marks started, doctors were skeptical that anyone without a medical degree could understand the intricacies of genetics. Hence the role of talking to patients and their families about hereditary diseases and possible birth defects has often been left to nurses and others.
Ms. Marks saw a great need for qualified counselors who could explain genetics to patients in plain language, listen with empathy and guide them through a complex web of emotional, ethical and legal decisions.
"We developed the concept that a non-medical genetic counselor can not only take some of the responsibility of doctors in relation to medical genetic care, but can also do a better job because they are better trained in genetics and counseling," said Dr. Marks told the New York Times in 1994.
Genetic testing was previously used primarily to diagnose genetic defects in fetuses and newborns, but it was able to predict the risk of developing a variety of diseases in adults, including breast cancer and ovarian cancer, in the mid-1990s. According to the Genetic Disease Foundation, more advanced tests can detect more than 6,000 genetic disorders today. Many are fatal or severely debilitating, and the need for trained counselors to help patients understand test results has grown exponentially.
"Joan recognized the need for professionals to help people deal with the fear of living with the results of their genetic tests," Mary-Claire King, geneticist at the University of Washington in Seattle and research partner of Ms. Marks told a telephone interview.
"Women who learned they had devastating mutations had to decide what to do to save their own lives," said Ms. King. (A prominent example is actress Angelina Jolie, who has a family history of ovarian cancer and had a preventive double mastectomy and later had her ovaries and fallopian tubes removed.)
"She taught her students how to empower their patients," added Ms. King. "Your standards define the field."
Joan Harriet Rosen was born on February 4, 1929 in Portland, Maine. Her mother, Lillian (Morrison) Rosen, played the piano for silent films and later worked in her family's home improvement store in Portland. Her father Maurice Rosen was a lawyer.
Joan's father died of a heart attack at the age of 12. One of her older brothers died of complications from scarlet fever.
Her mother, who remarried, the family moved to the Boston suburbs, where Joan attended Beaver Country Day School.
She moved on to Sarah Lawrence and graduated in 1951 with a major in psychology. She earned a Masters in Psychiatric Social Work from Simmons College (now Simmons University) in Boston and began her career as a psychiatric social worker in several New York hospitals.
She was made by mutual friends with Dr. Paul Marks and they married in 1953. Shortly thereafter, they moved to Washington, where Dr. Marks worked at the National Institutes of Health and Ms. Marks worked in social programs for disadvantaged children. They later moved to New York City, where they became an influential couple in the city's medical and social world.
Dr. Marks, who became President of Memorial Sloan Kettering Cancer in 1980, had previously opened the Department of Human Genetics and Development at Columbia University College for Doctors and Surgeons, where he was home to some of the world's foremost geneticists. Mrs. Marks took some of them to Sarah Lawrence, and they helped give her program a rigorous academic foundation.
"In addition to the training and sociological aspects, her program provided a strong foundation for the emerging science of human genetics," said her son Andrew in a telephone interview.
By the mid-1990s, there were 19 genetic counseling programs nationwide, all modeled after the Sarah Lawrence program and directed by Sarah Lawrence graduates.
In addition to her son Andrew, Mrs. Marks survived another son, Matthew; one daughter, Elizabeth; six grandchildren; and two great-grandchildren. Her husband died in April at the age of 93.
Ms. Marks retired in 1998 and the program she created was named after her in 2006. She has won numerous awards and prizes, including an honorary doctorate from Sarah Lawrence in 2019 when she was 90 years old.
"Joan Marks was the most dedicated and passionate genetic counseling advocate I have ever known," wrote Caroline Lieber, who succeeded Ms. Marks as director of the college's genetics program, in a recent tribute. "She put the profession on the map with style, charm, directness and skill."