Milestones in Genetic Counseling

It’s a major milestone by any standards, even if you consider that UW–Madison’s program was the first in the Midwest and the eighth in the United States (only five of which remain open).

I’ve had the privilege to be part of this program for most of those 40 years, first as a student, then as a clinical genetic counselor and now as its program director.

I have had a front-row seat to watch this profession begin, grow and flourish! You could say, I’ve grown up with the profession. Sheldon Reed, PhD, who is credited with coining the phrase “genetic counseling” (GC), published the book, Counseling in Medical Genetics, in 1955, the year I was born.

Sarah Lawrence College opened the nation’s first genetic counseling training program in 1969, the year I began high school, where I wrote a paper on genetic counseling. When I earned my MS in medical genetics degree from the School of Medicine and Public Health in 1980, I found only two jobs to which I could apply, and none at UW–Madison.

The scenario has changed. In the past 12 months, the Madison area has seven new genetic counselors. Nationally, according to the Bureau of Labor Statistics, “Employment of genetic counselors is projected to grow 28 percent from 2016 to 2026, much faster than the average for all occupations (7 percent).”

Genetic counselor employment statistics provide further evidence of the fast-paced growth of this profession, including 100 percent job placement within two months of graduation.

About half of the Master of Genetic Counselor Studies Class of 2018 had been offered positions for full-time employment by February of their final semester. More than 80 percent of the Class of 2018 already had accepted a job offer three full months before graduation!

Increased employment opportunities coincide with diversification. While our graduates are prepared for clinical practice, their skills are transferrable to other settings, including teaching, public health, research, and industry- and laboratory-related roles.

The most recent professional status survey (2016) of the National Society of Genetic Counselors showed that about 23 percent of respondents indicated they do not counsel patients, and only 58 percent considered their work to be “clinical.” In contrast, surveys before 2002 did not include non-clinical activities as answer options.

Genetic counseling practice has changed in other ways, too. Enhanced understanding of genetic mechanisms has led directly to molecularly based testing and gene-based therapies. For example, consider advances in the diagnosis and care of patients with cystic fibrosis (CF).

As a new genetic counselor in 1980, about all I could offer was an explanation of autosomal recessive inheritance, provide a recurrence risk of 25 percent to parents who had a previously affected child, and discuss the relatively poor prognosis. Discovery of the cystic fibrosis gene and the ability to determine the variant status of patients has made it possible to do much more.

I saw this firsthand after cystic fibrosis testing was added to Wisconsin’s newborn screening panel, and I was assigned, in 1991, to counsel parents whose babies screened positive for cystic fibrosis. New treatment options have greatly improved patients’ quality of life and longevity.

Similar examples exist in other practice areas. As a prenatal counselor at Madison General Hospital (now called UnityPoint Health-Meriter) in the 1980s, health care professionals could offer expectant parents low-resolution ultrasounds and amniocentesis, the latter having a low risk of miscarriage. Colleagues and I are now able to offer a personalized risk analysis by using only a maternal blood sample. These advances, however, come with a cost. It is imperative that knowledgeable health care professionals, including GCs, thoughtfully consider the complex ethical, legal and social implications that accompany these changes.

Today’s bright outlook for genetic counseling also has a flip side: A recent study by the National Society of Genetic Counselors indicates a shortage of U.S.-based genetic counselors in patient care. Equilibrium is estimated to be reached between 2023 and 2030.

To help address this shortage, the Master of Genetic Counselor Studies program has a strategic plan for growth, which includes:

• Expanding our class size
• Collaborating with statewide partners for additional clinical training sites
• Using distance education
• Piloting a telehealth rotation for clinical experiences
• Using an academic electronic medical record experience to enhance training without additional burden on clinical supervisors

Dr. Stephen Meyn has described his vision for the new UW Center for Human Genomics and Precision Medicine; he is the inaugural director. I find it gratifying that leaders of the School of Medicine and Public Health, UW Health, Waisman Center and other related entities recognize that genetic counselors are integral to this vision.

It has been a privilege and honor to be part of the history that has led up to creation of the Center for Human Genomics and Precision Medicine. It is even more exciting to help lay the groundwork for what’s to come.