Helping families navigate genetics through counseling: A history of the genetic counseling program at the Waisman Center

By Emily Leclerc | Waisman Science Writer

Casey Reiser, MS, CGC
Casey Reiser, MS, CGC

In high school, Casey Reiser took a class in genetics. She was enamored by the information taught to her. Chromosomes, DNA, RNA, the genetic basis for life. “I just thought it was the coolest thing ever,” Reiser says. Luckily for Reiser, she lived not thirty minutes from Madison, which boasted a university with an undergraduate genetics major in the oldest genetics department in the country. She came to the University of Wisconsin-Madison in 1973 to study genetics as an undergrad.

But something was missing. She loved genetics and the science but it wasn’t everything she wanted. Reiser’s mother was a social worker and Reiser spent a lot of time with her at the facility she worked at. Her mother worked at a residential facility for the severely developmentally and intellectually disabled. And being exposed to the individuals living there and what they and their families had to go through made Reiser wish she could use her genetics work to help the families in some way. Unbeknownst to Reiser, there was a burgeoning field where she could do just that.

“[My mom] actually was the one who told me there was this thing called genetic counseling,” Reiser says. And it clicked. A way to use her love of genetics to help people and work with families. “It just fell into place,” she says. With an undergraduate degree in genetics, Reiser applied to and was accepted into UW-Madison’s newly established master’s program in genetic counseling, housed at the Waisman Center, as part of the third class ever to go through the program. She would graduate from the program and later become its second director in 2000.

Reiser, MS, CGC, is now retired after more than 40 years as a genetic counselor and 22 years as the Genetic Counseling Program’s director. She is thrilled by how much the field has evolved and developed and can’t wait to see where it goes next as the need for genetic counselors continues to grow.

According to Reiser, a genetic counselor is, “a trained healthcare professional who works with families or individuals who either have or are concerned about a condition with genetic implications.” Genetic counselors help patients determine if genetic testing is appropriate, help unpack complex genetic testing results, help explain the impacts of those results, and help patients determine their next medical steps. They fill an important gap in medicine by providing patients with the most up-to-date genetics information and the context to know what to do with it. And with the field of genetics evolving every day, a genetic counselor’s role in medicine is becoming increasingly more important.

It takes a specialized education to become a genetic counselor as they need to not only learn the science but how to effectively convey that information to patients in a compassionate way. UW-Madison’s Genetic Counseling Program has been training top-tier genetic counselors since 1976. The program is one of the first established in the country and came about during a time when the profession was still developing.

“I entered the program in 1978 and, at that time, there weren’t any training manuals. There were no accreditation standards. There was no national certifying board. There wasn’t even a national organization,” Reiser says. But the program’s primary founder and first director knew there was a need for standardized training and would be integral in establishing the program and the curriculum.

Joan Burns, MS, MSSW
Joan Burns, MS, MSSW, in 1981

Joan Burns, MS, MSSW, led the charge in the training program’s creation. She completed her degree in genetic social work in 1973 in order to help parents with intellectually and developmentally disabled children. As a parent of child with disabilities herself, she increasingly saw the need for a program to train capable genetic counselors. So, in 1976, Burns along with a few collaborators, established the Genetic Counselor Program at UW-Madison.

In those first few years, the program barely stood on its own. It had almost no funding, borrowed courses from the social work and medical genetics departments, and had no educational standards to look to for assistance. And yet, the program flourished. “Joan really did a lot with nothing,” Reiser says. “When [the program] started, we had no curriculum built. So, when Joan built a course, it was from the ground up. She didn’t have a syllabus she could use. Instead of being handed a Lego kit with the directions she was dumped with 1,000 Lego pieces and told to build something.”

Over the next few years, Burns built a cutting-edge program that gave new genetic counselors the education to thrive.  Today, there have been more than 230 graduates from the program. There are currently 16 total students split between first and second year graduate student tracks with eight students in each class. There are many graduates in leadership positions (e.g. program directors, presidents of national organizations, directors of business), many involved with research and education, and almost all who graduated from the program either are working as genetic counselors or have now started to retire from meaningful work in the clinic or lab.

In 2000, Burns passed the reins to Reiser who continued to develop the program into a fully accredited and independent graduate degree program. The training program continues to improve the way genetic counselors are taught. “Whenever new standards come out about what we need to incorporate or what we need to be doing, I want to already have done it before they even recommend it. I think we have always been either ahead or in the planning stages. We are never playing catch up. We work in an academic medical center where you have to keep up with what’s at the cutting edge and we are right there with them. We work at the top of our scope. And that is something I’ve been very proud of and it didn’t start with me. It was certainly true for Joan as well,” Reiser says.

As the training program grew and developed, the place of genetic counselors also changed. A need for their expertise is being seen far and wide. More and more genetic counselors are being hired into clinics and areas of medicine where, traditionally, they may not seem to have a place – like a neurology department

Abigail Freeman, MS, CGC
Abigail Freeman, MS, CGC

Abigail Freeman, MS, CGC, is a genetic counselor with UW Health and assists patients with genetic neurological conditions such as different forms of epilepsy, neuromuscular conditions, or neurodegenerative diseases like Alzheimer’s and ALS. Many people may not necessarily expect a genetic counselor to have a place in a neurology clinic but Freeman provides important services to patients in the clinic. From helping patients decide whether or not to receive genetic testing, to helping patients decipher complex results, to helping patients with a diagnosis understand what that means and its treatment implications. Freeman is there to work through every aspect of the genetic implications of neurological diseases. “I meet patients wherever they are on their genetic testing journey,” Freeman says.

As genetic testing becomes more common and more readily available, Freeman’s role inside the neurology clinic becomes ever more crucial. “Genetic testing is becoming a more central part of diagnosis for many neurological conditions, especially neuromuscular. A lot of patients are becoming aware of genetic testing and requesting it in order to better understand a diagnosis or to provide information for family members. A genetic counselor can handle a lot of those complex situations to help patients or address their complex results,” Freeman says.

The skills Freeman employs every day when working with patients comes from her time spent with UW-Madison’s Genetic Counselor Program at the Waisman Center. Reiser is already impressed with the effect she has had. “She has already had so much impact in the neurology clinic in terms of helping refine or find more accurate diagnosis for people in the very short time she’s been there,” Reiser says. “They love her.”

Laura Birkeland, MS, CGC
Laura Birkeland, MS, CGC

Genetic counseling is a relatively new profession, only starting to find roots in the mid-1900s. In that short time span, it has developed into an essential part of patient care. The Waisman Center is proud to host a program that is dedicated to educating the next generation of exceptional genetic counselors as the field continues to grow and evolve. After Casey Reiser’s retirement as the program’s director, Laura Birkeland, MS, CGC, assistant professor in the School of Medicine and Public Health, took over. The program continues to grow and to take the next steps forward. “When thinking of the future of the Master of Genetic Counselor Studies program, I would be remiss to not consider the past,” says Birkeland. “Our program has a long history of graduating competent and compassionate genetic counselors. We have been integrated within the Waisman Center since our inception, and that has afforded many opportunities for students to work with and alongside leaders in clinical care, research, and education. Over the last 40 years, new technologies have resulted in dramatic changes to how genetics intersects with healthcare. The future of medical genetics will likely leverage artificial intelligence into research and clinical care, and genetics will be further harnessed to screen for and ultimately treat diseases in new and innovative ways,” she says. “As such, the profession of genetic counseling and how it is taught will evolve.  Yet, two aspects of our graduate program will remain constant. First, we will continue to be innovative and ensure that graduates are prepared to care for their patients in primary care, specialty care, or at a population level. Secondly, and most importantly, the person and family in patient care will remain the focus for all we do.”

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