First Responders

When Sarah Lawrence created the nation’s first master’s program to educate genetic counselors, few understood the urgency or realized the potential. Today SLC graduates dominate a growing field, linking medical science with the patient story.

by Leslie Garisto Pfaff, Illustration by Traci Daberko

First Responders

When Sarah Lawrence created the nation’s first master’s program to educate genetic counselors, few understood the urgency or realized the potential. Today SLC graduates dominate a growing field, linking medical science with the patient story.

In 1974, five years after the founding of Sarah Lawrence’s graduate program in human genetics, Joan Marks ’51 invited her newly assembled advisory board to evaluate the program on campus. Marks, then the program’s director, had appointed the board members, all eminent geneticists. Among them were Alexander Bearn, chairman of the department of medicine at Cornell University Medical College and physician-in-chief at New York Hospital; Kurt Hirschhorn, a founding member of the American College of Medical Genetics; and Arno Motulsky, who helped found the field of pharmacogenetics.

After a morning spent interviewing faculty and students, the board members recessed for lunch and an informal meeting with Charles DeCarlo, then the president of Sarah Lawrence. DeCarlo had yet to be convinced that the two-year master’s degree program—designed to teach students how to interpret genetic information and help patients and their families understand the often complex implications of the information—was right for a college that, at the time, offered very little in the way of scientific training, and he asked the board members to weigh in.

Marks still remembers the response from one of the assembled geneticists. “He said, ‘If this kind of program were presented to the board of my university, they would take five years to argue about it, and by the time they were through, everyone would have lost their enthusiasm for doing it.’ So he got it—the fact that, in the beginning, when there was no guarantee that it was going to work, it was something that only a place like Sarah Lawrence could do.”

After only a year on campus, Anne Greb fully understands why the Human Genetics Program began where it did. “It started,” says Greb, the program’s current director, “because someone on the faculty, Melissa Richter ’47, was creative and thought outside the box and saw there was a need for this new type of profession, and Sarah Lawrence said, ‘Go for it.’”

"[The program] started because someone on the faculty, Melissa Richter '47, was creative and thought outside the box and saw there was need for this new type of profession, and Sarah Lawrence said, 'Go for it.'"

Richter was the director of SLC’s Center for Continuing Education when she conceived a program to train the nation’s first generation of genetic counselors. At the time it was the only such graduate program in America. In 1969 the science of genetics was, if no longer in its infancy, still in a kind of early adolescence. Scientists Francis Crick and James Watson, after all, had only discovered the structure of DNA a decade and a half earlier (a finding for which they would share a Nobel Prize). Surely neither Richter nor Marks could have foreseen the explosive growth the field would experience in the decades to come—nor that, nearly a half century later, the Joan H. Marks Graduate Program in Human Genetics (so named, in 2006, to honor its longtime director) would remain the largest, most influential, and most highly regarded such program in the country, if not the world.

Today the majority of genetic counselors working in the United States are Sarah Lawrence graduates, as are nearly half the directors of the country’s graduate genetic counseling programs, as are 14 of the 20 winners of the annual Natalie Weissberger Paul National Achievement Award, bestowed for service on behalf of the National Society of Genetic Counselors (NSGC) and the profession. So it’s not surprising that Greb, without any trace of hyperbole, refers to SLC’s Human Genetics Program as “the program.”

A field that once had medical professionals questioning its validity has now been incorporated into many areas of medicine. ... There are now almost more job openings than counselors to fill them.

It was quite literally the program in 1969, though the accolades would be some time in coming. When SLC’s human genetics curriculum was conceived, the profession of genetic counselor—a specialist in medical genetics and psychosocial counseling—didn’t exist, and many in the medical establishment weren’t convinced that it should. At the time, whenever a doctor identified a genetic condition in a patient, it was the doctor, or in some cases a research geneticist (who, unlike a genetic counselor, holds a PhD in genetics), who delivered the news—and many doctors resented the idea of someone without a full-fledged medical degree (or at the very least, a doctorate) encroaching on their territory. After reading about the proposed program, Wayne Finley of the University of Alabama’s Laboratory of Medical Genetics remarked that “counseling by those without an MD” was “potentially dangerous.” Joan Marks, however, witnessed evidence to the contrary.

In 1971, Marks had the opportunity to visit “a major medical center in New York City” (which she’s reticent to identify) where Sarah Lawrence students were receiving their clinical training. As part of the visit, she was invited to observe the interview of a 12-year-old patient who had been diagnosed with a genetic abnormality. It took place in a cavernous amphitheater, seats rising to the ceiling, many of them filled with white-coated physicians, while the patient, his family, and the senior geneticist sat on a small stage below them. The geneticist described the child’s condition, then thanked the family for coming. “There was no effort on the part of the doctor to discuss the child’s prognosis or the family’s future plans,” Marks recalls. “I was horrified at the crudity of the presentation and the complete absence of planning for the child.” She walked out of the amphitheater thinking, “This is not where the Sarah Lawrence students are going to get training anymore.” Marks set out to change that experience, and today doctors and genetic counselors work with patients as partners in settings quite different from what Marks saw that day.

It was clear to Marks that the counseling aspect of a genetic counselor’s education would be as important as the science. To make sure her students were equipped with the skills necessary to sensitively communicate complex medical information to a patient who might well be in deep distress, she hired a psychologist, Steven Firestein, to teach a yearlong course in counseling that he and Marks designed together.

In fact, finding highly qualified and enthusiastic faculty members for the program was never a challenge, even in its earliest days. Marks’ husband, Paul, a hematologist and cancer expert, introduced her to any number of potential instructors among New York City’s major teaching hospitals. What surprised Marks was that each one of them was interested. “Intrigued, in fact,” she says. “And once they started to teach a course, they loved it.” They particularly loved the students, who struck many of them as more eager and responsive than the young doctors they normally taught.

The students also impressed the supervisors who oversaw their fieldwork at local medical centers, an aspect of the program that offered an invaluable in-the-trenches learning experience. Early on, Marks says, “I realized that the recruitment of placements for students was probably the most important thing I had to do.” In 1974, thanks to a grant that Marks procured from the March of Dimes, four students were placed at Columbia Presbyterian’s College of Physicians and Surgeons, where they counseled patients and so impressed the medical center that it eventually established several permanent genetic counseling positions. A year later, a number of students were also training off site at Albert Einstein and Cornell medical schools and Beth Israel Hospital. Sarah Lawrence’s location—just north of New York City—made enlisting clinical partners relatively easy. “New York City has the largest percentage of super hospitals in the country,” Marks says, “and all I had to do was contact them and tell them about our students, and they were very interested and amazingly receptive.”

The first crop of genetic counselors—eight women who received their degrees in 1971—emerged into a workplace that didn’t know it wanted them. “When they graduated, they had to go out to the hospitals and say, ‘This is why you need me,’” says Caroline Lieber MS ’80, the program’s director from 1998 to 2013. The scarcity of jobs forced Elizabeth Balkite MS ’79, a one-time interim director, to endure a daily three-hour round-trip commute from her home in Ridgefield, Connecticut, to her first job in the Genetics Department at the University of Connecticut Health Center in Farmington. When she told people what she did for a living, most of them asked her what a genetic counselor was.

Soon, though, both hiring and recognition of the profession increased, and at least some of the credit goes to the program itself. Invariably, Marks says, the medical faculty, after working with the students, realized their hospital needed a genetic counselor. Meanwhile, both the media and the general public were becoming fascinated with the new science of human genetics, which found its first widespread clinical application in amniocentesis, the process of examining fetal cells in amniotic fluid for genetic abnormalities, particularly those that can cause Down syndrome and related disorders. When Lieber graduated a decade later, she says, “There was a very clear job description associated with being a genetic counselor.”

In those early days, being a genetic counselor generally meant working in pediatrics or prenatal medicine. But as the science changed and researchers discovered the genetic basis of an increasing number of conditions, including cancer, heart disease, and even mental illness, counselors could choose from a growing array of subspecialties. A field that once had medical professionals questioning its validity has now been incorporated into many areas of medicine. Where genetic counselors once had to convince prospective employers to hire them, there are now almost more job openings than counselors to fill them. Today, genetic counselors work in laboratories and pharmaceutical companies, establish and run genetic counseling programs in major medical centers, and act as consultants to other health care professionals, such as physicians, nurses, and physician assistants. And the Sarah Lawrence program no longer stands alone. Across North America, 34 colleges and universities operate graduate programs in genetic counseling.

Lindsey Alico MS ’11 began her career at New York Hospital Queens as a cancer genetic counselor. Today she works at Myriad Genetics, a laboratory that develops and performs genetic tests, helping physicians identify and manage patients with hereditary cancer syndromes. Her training at Sarah Lawrence, she says, prepared her well for her new, nontraditional position. “I think that the skill set is really the same—the ability to translate complex genetic information and to communicate that to someone who hasn’t had such extensive genetic training,” she says, noting that many physicians take only a single semester of genetics education in medical school.

The expansion in job opportunities, of course, mirrors the exponential growth in our understanding of human genetics. In the 1980s, scientists identified the genes responsible for Huntington disease and cystic fibrosis. By 2003, the Human Genome Project had successfully mapped virtually all the genes in the human body. And as we’ve learned more about our genes, we’ve also developed more accurate and precise tests to diagnose genetic defects.

Several years ago, Joy Larsen Haidle MS ’95, the current president of the National Society of Genetic Counselors, was working with a young breast cancer patient who had a moderate family history of the disease. But DNA testing for the BRCA1 and BRCA2 genes, which predispose a woman to breast cancer, was negative. Because of the woman’s youth, Larsen Haidle suspected there was a genetic link. But the test, she says, “just didn’t answer the question.” Then, less than two years later, a new test allowed her to identify a mutation in a gene, known as PALB2, that was responsible for her patient’s cancer. Although the patient died shortly after the mutation was identified, Larsen Haidle says, “It was a huge blessing for her to be able to share critical information with her children and family and know they would be able to protect themselves.”

"Reading about a condition in a book is so different from meeting a child who has that condition. When you meet that child, you never forget him."

Even as the science progresses apace, the program’s counseling component remains as important as ever. During her tenure as director, Caroline Lieber says she was faced with the challenge of “keeping the science current.” But she also aimed to “keep that gestalt that really is genetic counseling, which is working with the people, hearing their stories, and then helping them to process the information.” To that end, she introduced the idea of what she calls “the patient story” into the curriculum. “All patients come into this with their own story and set of circumstances that make them react the way they do,” she explains. “If you can understand what their story is, you can pick out the things that are important to them in terms of their decision making.”

Daniel Riconda MS ’88, a senior genetic counselor at the Winnie Palmer Hospital for Women and Infants in Orlando, Florida, compares genetic counselors to first responders who run into a burning building when everyone else is running away. “You go headlong into a crisis situation to help your patient through what may be the worst time of his or her life,” he says. “You have to have good listening skills, to be able to assess on the fly in a fairly fluid way what your patient feels and needs.” In other words, to elicit the patient story.

It’s a technique that Heather Hampel MS ’95 says she honed through her clinical fieldwork at New York’s Albert Einstein Medical Center and Memorial Sloan-Kettering Cancer Center. Today, Sarah Lawrence partners with more than 50 hospitals and other medical institutions in the New York area, and students work and learn in the field throughout their training. “By the time they graduate,” Greb says, “they will have pretty much seen and done everything in every type of setting that our area has to offer.”

For Hampel, the most valuable aspect of her clinical training was the exposure it afforded to an extraordinary array of genetic conditions. That could happen only in New York’s cultural and ethnic melting pot, she says. Doing fieldwork at Columbia Presbyterian Hospital, she met a child with Williams syndrome, a rare genetic condition that can cause developmental delays, learning disabilities, and cardiovascular problems. “Reading about a condition in a book is so different from meeting a child who has that condition,” says Hampel, today the associate director of Ohio State Medical Center’s Division of Human Genetics. “When you meet that child, you never forget him.”

In addition to its emphasis on fieldwork, another aspect of the Human Genetics Program that hasn’t changed is its visionary nature. Its founder and directors have always kept one eye on the horizon, and that’s as true today as it was when Melissa Richter first decided the world needed something called a genetic counselor. Human genetics students tend to share that vision, that sense that they’re helping to shape the field. Earlier this year, three genetic counseling students from Sarah Lawrence received the 2014 National Society of Genetic Counselors Student Research Project Award for their capstone project, which addresses the need for genetic counselors to improve their knowledge and skills in the area of LGBT cultural competency. Two other Sarah Lawrence students, Kara Anstett MS ’15 and Sharon Chen MS ’16, recently received the society’s Audrey Heimler Special Project Award for work focusing on the profession’s future. Noting the paucity of minority students drawn to genetic counseling, Anstett and Chen designed a Web site to help recruit African American and Latino/a students to the field, emphasizing factors that have been recognized as significant to minorities, such as job security, community impact, and flexible schedules. The project represents the kind of creative thinking that spawned the Human Genetics Program at Sarah Lawrence, helped it to become a model in its field, and is likely to remain a constant even as the realm of genetics continues its frenzied and miraculous expansion.