Joan Marks, Doyenne of Genetic Counselors, Dies at 91

Joan H. Marks, who was a pioneer in genetic counseling, the apply 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 Faculty in Bronxville, N.Y., for 26 years. When she began, in 1972, this system, the primary within the nation to coach genetic counselors, was three years outdated.

Throughout her tenure, she developed it into the biggest such program within the nation, which it stays, and helped to determine a brand new well being care discipline. As we speak there are literally thousands of licensed genetic counselors in america — professionals skilled in each genetics and counseling who assist sufferers and their households confront quite a lot of inherited circumstances.

However when Ms. Marks started, medical doctors have been skeptical that anybody and not using a medical diploma may perceive the intricacies of genetics. So the function of speaking with sufferers and their households about inherited problems and potential beginning defects was typically left to nurses and others.

Ms. Marks noticed a obtrusive want for expert counselors who may clarify genetics in plain language to sufferers, hear with empathy and information them by a posh internet of emotional, moral and authorized decisions.

“We created the idea {that a} non-physician genetic counselor couldn’t solely assume among the obligations of physicians when it comes to medical genetic care, but in addition would do a greater job as a result of they have been higher skilled 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 in a position to predict the chance of creating all kinds of grownup circumstances, together with breast most cancers and ovarian most cancers. As we speak, extra superior exams can detect more than 6,000 genetic disorders, based on the Genetic Illness Basis. Many are deadly or severely debilitating, and the necessity for skilled counselors to assist sufferers perceive the check outcomes has elevated exponentially.

“Joan acknowledged the necessity for professionals to assist folks deal with the nervousness of dwelling with the outcomes of their genetic exams,” Mary-Claire King, a geneticist on the College of Washington in Seattle and a analysis accomplice of Ms. Marks, stated in a telephone interview.

“Ladies who discovered they carried devastating mutations wanted to determine what to do to save lots of 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 easy methods to empower their sufferers,” Ms. King added. “Her requirements outline the sector.”

Joan Harriet Rosen was born on Feb. 4, 1929, in Portland, Maine. Her mom, Lillian (Morrison) Rosen, performed the piano for silent motion pictures 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. Certainly one of 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 Faculty.

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 Faculty (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, and so they 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 applications for underprivileged kids. 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 Heart in 1980, had earlier began the division of human genetics and improvement at Columbia College Faculty of Physicians and Surgeons, the place he hosted among the world’s main geneticists; Ms. Marks introduced a few of them to Sarah Lawrence, and so they helped give her program a rigorous tutorial underpinning.

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

By the mid-1990s, there have been 19 genetic counseling applications nationwide, all of which have been modeled on the Sarah Lawrence program and 5 of which have 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 gained quite a few honors and awards, together with an honorary doctorate from Sarah Lawrence in 2019, when she was 90.

“Joan Marks was essentially 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 latest tribute. “She put the occupation on the map with type, allure, directness and savvy.”

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