Joan H. Marks, who was a pioneer in genetic counseling, the follow of serving to sufferers perceive their threat of an inherited medical situation, and who developed it right into a full-blown occupation, died on Sept. 14 at her dwelling in Manhattan. She was 91.

Her son Dr. Andrew Marks stated the trigger was coronary heart failure.

Ms. Marks was the director of the graduate program in genetic counseling at Sarah Lawrence School in Bronxville, N.Y., for 26 years. When she began, in 1972, this system, the primary within the nation to teach genetic counselors, was three years previous.

Throughout her tenure, she developed it into the biggest such program within the nation, which it stays, and helped to ascertain a brand new well being care discipline. At present there are millions of licensed genetic counselors in the USA — professionals educated in each genetics and counseling who assist sufferers and their households confront a wide range of inherited circumstances.

However when Ms. Marks started, medical doctors had been skeptical that anybody with out a medical diploma might perceive the intricacies of genetics. So the position of speaking with sufferers and their households about inherited problems and potential delivery defects was typically left to nurses and others.

Ms. Marks noticed a obvious want for expert counselors who might clarify genetics in plain language to sufferers, pay attention with empathy and information them via a posh internet of emotional, moral and authorized decisions.

“We created the idea {that a} non-physician genetic counselor couldn’t solely assume a number of the tasks of physicians by way of medical genetic care, but in addition would do a greater job as a result of they had been higher educated in genetics and in counseling,” Ms. Marks told The New York Times in 1994.

Genetic testing was as soon as primarily used for diagnosing genetic defects in fetuses and newborns, however by the mid-1990s it was capable of predict the danger of growing all kinds of grownup circumstances, together with breast most cancers and ovarian most cancers. At present, extra superior checks can detect more than 6,000 genetic disorders, in line with the Genetic Illness Basis. Many are deadly or severely debilitating, and the necessity for educated counselors to assist sufferers perceive the check outcomes has elevated exponentially.

“Joan acknowledged the necessity for professionals to assist individuals deal with the anxiousness of dwelling with the outcomes of their genetic checks,” Mary-Claire King, a geneticist on the College of Washington in Seattle and a analysis associate of Ms. Marks, stated in a cellphone interview.

“Girls who realized they carried devastating mutations wanted to determine what to do to avoid wasting their very own lives,” Ms. King stated. (A outstanding instance is the actress Angelina Jolie, who has a household historical past of ovarian most cancers and who, as a safety measure, had a double mastectomy and later had her ovaries and fallopian tubes removed.)

“She taught her college students the way to empower their sufferers,” Ms. King added. “Her requirements outline the sphere.”

Joan Harriet Rosen was born on Feb. 4, 1929, in Portland, Maine. Her mom, Lillian (Morrison) Rosen, performed the piano for silent films and later labored at her household’s ironmongery store in Portland. Her father, Maurice Rosen, was a lawyer.

Joan’s father died of a coronary heart assault when she was 12. One in all her older brothers died of problems of scarlet fever.

Her mom, who remarried, moved the household to the Boston suburbs, the place Joan attended Beaver Nation Day College.

She went on to Sarah Lawrence, graduating in 1951 with a deal with psychology. She earned a grasp’s diploma in psychiatric social work from Simmons School (now Simmons College) in Boston, then started her profession as a psychiatric social employee at a number of New York hospitals.

She was launched by mutual mates to Dr. Paul Marks, they usually married in 1953. Shortly thereafter they moved to Washington, the place Dr. Marks labored on the Nationwide Institutes of Well being and Ms. Marks labored in social service packages for underprivileged youngsters. They later moved to New York Metropolis, the place they turned an influential couple within the metropolis’s medical and social worlds.

Dr. Marks, who turned president of Memorial Sloan Kettering Most cancers Middle in 1980, had earlier began the division of human genetics and growth at Columbia College School of Physicians and Surgeons, the place he hosted a number of the world’s main geneticists; Ms. Marks introduced a few of them to Sarah Lawrence, they usually helped give her program a rigorous educational underpinning.

“Along with the coaching and sociological elements, her program offered a powerful foundation within the rising science of human genetics,” her son Andrew stated in a cellphone interview.

By the mid-1990s, there have been 19 genetic counseling packages nationwide, all of which had been modeled on the Sarah Lawrence program and 5 of which had been directed by Sarah Lawrence graduates.

Along with her son Andrew, Ms. Marks is survived by one other son, Matthew; a daughter, Elizabeth; six grandchildren; and two great-grandchildren. Her husband died in April at 93.

Ms. Marks retired in 1998, and this system that she constructed was named for her in 2006. She received quite a few honors and awards, together with an honorary doctorate from Sarah Lawrence in 2019, when she was 90.

“Joan Marks was probably the most dedicated and passionate advocate for the genetic counseling discipline that I’ve ever identified,” Caroline Lieber, who succeeded Ms. Marks as director of the faculty’s genetics program, wrote in a current tribute. “She put the occupation on the map with fashion, allure, directness and savvy.”



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