1972-1980

In the fall of 1972, Melissa Richter took a sabbatical at Radcliffe College. Unbeknownst to her colleagues, Richter was suffering from breast cancer and would not return to the program she had founded. Richter was replaced first by Jessica Davis, M.D. and Joan Marks (SLC ‘51), as co-directors of the SLCHGP.

Marks became director of the program in 1973. And for the next 25 years, she would lead the program as it struggled for and found recognition, outside funding and internal support. Over the next several years, rapidly expanding genetic knowledge and technology, and growing government support would help spur the creation of infrastructure for the human genetics counseling profession.

Marks, who was trained as a psychiatric social worker, believed genetic counselors could perform valuable functions beyond assisting physicians and gathering data. Given the powerful and sometimes devastating knowledge available—a couple might learn their child may have Down’s syndrome, or both partners could learn they carry the Tay-Sachs gene—more attention needed to be paid to the emotional aspects of genetics. As she wrote in the program’s 1973 annual report, "It was inappropriate to be training genetic counselors without, in fact, teaching them counseling skills."

In the spring of 1973, a seminar in genetic counseling was developed and taught by psychotherapist Dr. Steven Firestein. This focus on the counseling component of medical genetics was ultimately added to the curriculum as a two-semester course in 1974, augmented by a monthly seminar for graduates dealing with the ethical and social aspects of genetic diagnoses.

The program sought to maintain a curriculum at the cutting edge of this rapidly expanding field by assembling an external Advisory Board composed of medical genetics experts. Among the first to join the Board in 1973 were Alexander Bearn, M.D., chair of the department of medicine at New York Hospital; Arno Motulsky, M.D., of the University of Washington; Arthur Robinson, M.D., of the University of Colorado; and Kurt Hirschhorn, M.D. Later members were Judith Hall, M.D., Thomas Caskey, M.D., Mary-Claire King, Ph.D., and two graduates of the program, Audrey Heimler and Debbie Collins. This Board met periodically at SLC to meet with students and faculty and to review the curriculum. Their suggestions were valuable and they themselves became advocates for the profession.

The program also established firmer links with area hospitals. Supported by a 1973 grant from the Jeremiah Milbank Foundation, the program set up a study at Columbia-Presbysterian’s College of Physicians and Surgeons to demonstrate that the program could turn out graduates who were "skilled enough to interact effectively with medical doctors . . . at the same that they provided more humane care to patients."

Phradie Gold (M.S. 1971) and four students were placed at Columbia Presbyterian. They counseled patients on genetic research projects, and provided information to parents thinking about having children. Impressed with the contributions these genetic counselors made to clinical services, the medical center ultimately established several staff positions for genetic counselors. By 1974, several students were spending two days a week in supervised training at New York City institutions like Albert Einstein Medical School, Cornell Medical School, Beth Israel Hospital and Columbia-Presbyterian.

Despite the progress, the SLCHGP encountered continuing skepticism—even from within the College. "In looking to the future of the program, we must either develop the program so that it carries itself on current tuition income or phase it out in some equitable and sensible way," SLC President Charles DeCarlo wrote to Joan Marks in February 1974. Fortunately, the federal Health Resources Administration that year committed to a second five-year grant for $340,000, which began in 1975.

The program continued to attract applicants, and the student body was changing. In 1974, the program received 364 inquiries and enrolled 13 new students. The student body also grew younger—in 1974, 33 percent of the all-female class was under the age of 25—and somewhat more diverse. The first male entered the program in 1975.

These changes highlighted a need for financial aid for students. In 1974, Marks successfully attracted funding from the March of Dimes—a three-year grant of $150,000 to support financial aid, curriculum development and library acquisitions. In 1974, the March of Dimes extended its generous support to 9 of the 20 incoming students, who received a total of $18,000 in financial aid.

In the fall of 1974, Joan Marks was invited to deliver a paper on genetic counseling at the annual meeting of the American Society of Human Genetics Plenary Session in Portland, Oregon. This was a ground-breaking event in the evolution of the role of the genetic counselor as part of the health professions. The audience was composed mostly of M.D. geneticists and a very lively question and answer period followed the presentation. Not all of it was in favor of the new field. However, approximately 1,000 geneticists were informed about the field and many were receptive to the addition of genetic counselors to their medical team. In October 1974, Marks wrote an encouraging letter to Melissa Richter describing her experience in Portland. Richter died a month later, on November 28, 1974, in Providence, Rhode Island. The following year, the program established the annual Melissa Richter Memorial Lecture. The first was given by Dr. Charles R. Scriver and Carol L. Clow of McGill University on "Genetic Disease: The Problem of ‘Being Different’". Over the years, scientists and experts such as Indiana University law professor Roger Dworkin, Yale University Geneticist Dr. Leon Rosenberg and lawyer Morris Abram presented these lectures.

Meanwhile, technological advances like amniocentesis were propelling the field of genetics forward. First used in the 1960s, the technique of drawing amniotic fluid from a pregnant woman and analyzing the fetal cells opened new frontiers of knowledge. Amniocentesis allowed doctors to make prenatal diagnoses of conditions such as neural tube defects, Tay-Sachs, Down’s Syndrome and chromosomal abnormalities. This knowledge added a new dimension to the challenges of genetic counseling.

In addition, researchers began to discover and document the increasing number of diseases that had a genetic component: diabetes, heart disease and several forms of cancer. Throughout the history of the program, such discoveries would continually influence the content and trajectory of the SLCHGP curriculum. In 1976, a three-semester sequence was started for Issues in Genetic Counseling I and II. A half-semester Introduction to Clinical Medicine, taught by William Johnson, M.D., of Columbia-Presbyterian, and a Biochemistry course were soon added as part of a new 36-credit system instituted in 1977. In 1976, Dr. Dorothy Warburton, a renowned geneticist, joined the faculty to teach a laboratory course in cytogenetics.

The program—and the profession—was getting its legs under it. In 1977 Joan Marks wrote, "I believe the medical profession, as well as the consumer, has accepted the need and the efficacy of genetic counseling by non-physicians." In 1977, some 105 people were enrolled in SLCHGP and five sister programs—at the University of California at Berkeley, University of California at Irvine, University of Colorado, Rutgers University and University of Wisconsin.

As the field developed, an effort began to share information about the training of genetic counselors. At Asilomar, California, in 1976, a group of academicians and government officials—funded by the March of Dimes—met to start a movement to standardize areas of study for genetic counselors and accreditation of the field.

Federal support continued to grow. In 1976, Congress passed the National Genetic Diseases Act, which earmarked $8 million to help build regional genetic service programs. Within a few years, 20 states received funding, which included money to create positions for non-physician genetic counselors. Many of those who staffed such clinics were graduates of SLC. These developments, combined with the ability to offer financial aid, allowed the program to recruit students from all over the country.

In 1977, the American Society of Human Genetics (ASHG) created a new organization, the American Board of Medical Genetics (ABMG). In 1979, the ABMG was tasked with accrediting training programs and certifying individuals. All levels of professionals in the ASHG—the M.D., Ph.D. and the M.S. counselors—were required to pass the same exam in medical genetics. This unique requirement documented the high level of training required for non-physician genetic counselors. Genetic counselors were represented on the ABMG board, but genetic counselors were a small minority in the leadership of ASHG. Accordingly, leaders in the field believed it important to form their own organization. In March 1978, a meeting held in New York City of nearly 100 genetic counselors led to the founding of the National Society of Genetic Counselors, Inc. Its first president was Audrey Heimler, a 1971 graduate of SLCHGP.

By the end of the 1970s, the SLCHGP was standing on its own feet—financially and academically. In the 1979-80 academic year, the federal Allied Health Grant first awarded in 1975 was in its final year, and potentially up for renewal. "To date, no final word has been received but the program has submitted a viable budget for 1980-81 based solely on tuition income and covering all expenses including financial aid," Marks wrote in her 1980 annual report.

The graduates of the program were taking their place in the field. In 1979, a SLCHGP survey drew responses from 64 of 120 graduates, of whom 73 percent were clinically employed. Most graduates held staff positions at medical genetics clinics, "usually in a department of pediatrics at a major teaching hospital affiliated with a medical school," wrote Marks in the American Biology Teacher. The median salary was $14,000 at that time.

By the end of the 1970s, the role of genetic counselor had evolved into a combination of teacher, empowering counselor and effective advocate. "The whole ethos of the field is in ‘nondirective counseling’," Marks later told Parents magazine. "What this means is the counselor’s total reliance on the patient’s autonomy to make a decision" [that is best for the individual].