Many expected the Human Genome Project to cause a revolution far beyond the field of genetics — into economics and culture — and thought the 13-year, $3 billion international research endeavor would allow us to understand and control viruses, identify the root causes of cancers, advance forensics, create better crops and update anthropology tools to get a better view of our evolutionary path.
However, in 2003, after the human genome map was deemed complete, we learned that our genes aren’t merely a blueprint for the body’s control system. In fact, genetics researchers still are working to unravel their function. What do these segments of nucleotides do, and how do they do it?
These questions perplex scientists and demonstrate the vast amount of information geneticists must learn. Other more personal questions stymie parents whose babies are born with gene-related conditions, many of which cause physical and developmental differences that may significantly impact function. They simply want to know what is happening to their children.
With a passion in this area — years earlier than the Human Genome Project — Joan Burns, MS ’57, MSSW ’73, felt strongly that families deserved to know why some infants are born with gene-related conditions and wanted to make sure families had the support and resources necessary to deal with the emotional and financial impact of these conditions.
Calling upon her science and social work background and leadership skills, she founded and became the first director of the University of Wisconsin-Madison Genetic Counselor Training Program, now housed in the University of Wisconsin School of Medicine and Public Health (SMPH).
In 1976, the first trainees entered the program, which combines advanced education in human, molecular and medical genetics with skills and experience in counseling. It teaches students how to become translators of complex medical information for parents of children who have genetic conditions such as cystic fibrosis or Down syndrome, and for adults whose background includes risk factors for hereditary conditions.
The Genetic Counselor Training Program was the first such program in the Midwest and about the seventh in the United States.
Sonja Henry, MS ’02, a genetic counselor, works with a family so they can better understand their baby’s inherited condition.
“Having a child with a significant disability undoubtedly fueled Burns’ passion,” explains Casey Reiser, MS ’80, who earned her bachelor’s degree in genetics at UW-Madison and her master’s degree from the program she has directed since Burns retired in 2000.
Genetic counselors call upon both art and science to fulfill a compassionate role for families and must embrace working in an ever-changing field. Students enter the program after they earn degrees in programs such as biology, genetics, nursing, psychology, public health or social work.
For instance, after she earned a bachelor’s degree in biology with a minor in Spanish, Hallee Adamsheck entered the School of Medicine and Public Health Genetic Counselor Training Program. The Minnetonka, Minnesota, native had learned about genetic counseling through experiences with hereditary cancer in her family, shadowed genetic counselors and participated in a bioinformatics research project using next-generation gene-sequencing technology.
“I am extremely grateful for the opportunity to continue my education in this program and appreciate its interdisciplinary focus and emphasis on both the scientific context of disease and emotional needs of patients and families,” says Adamsheck.
Noting that she was honored to receive the Joan Burns Scholarship, Adamsheck says, “I share Ms. Burns’ belief that genetic counseling is integral to each family’s experience processing the complex information that accompanies a genetic diagnosis. Like her, my experiences have driven my passion toward helping families navigate through these experiences. I am thrilled to make my dream of becoming a genetic counselor a reality.”
Calling upon the information provided through the Human Genome Project, genetic counselors distill test results, histories and exams into something meaningful for each family, and that has only gotten more complex, says Reiser.
A genetics test can’t be interpreted by reading a piece of paper; it must be done in the context of a patient’s clinical history, physical examination and other laboratory tests. Clinical decision making — particularly the gut-wrenching decisions some parents must make — is extremely difficult.
Similarly, technology has made clinical training much harder, Reiser notes. Unlike the wheel, the automobile and the computer chip, the Human Genome Project offered no immediate advantage. Instead, it resulted in more ambiguity and many more questions.
Adamsheck adds, “Genetics is unique in that the information a patient learns generally impacts his or her entire family. Sharing this information and dealing with its implications can be a difficult process, and genetic counselors are trained to help patients face those challenges. Genetic counselors also are key players in interdisciplinary health care teams, because we are able to use our expertise in genetic concepts to help other health care professionals understand things like the implications of a family history, the appropriate genetic test to order or the significance of a test result.”
Reiser says she learned about molecular genetics as a practicing counselor because it was new at the time and was not part of her undergraduate or graduate training.
“Today’s students get that as part of their training,” she says, adding that molecular genetics courses are recommended for undergraduate students who are considering this field. “And while there are many ways to learn this type of thing, the hardest part is converting that content into practice. It requires discussion, personal reflection and integration.”
As of 2015, six students are accepted into the competitive 21-month program each year, up from five per year in the past. While trainees certainly must master genetics, they also need to learn how to be an educator and a counselor.
Prospective students often ask Reiser whether the program is more science-based or psychosocially oriented. The two attributes — educating while counseling — go hand-in-hand, like a duet of listening and teaching.
“Whether you’re a teacher talking to high school students or a counselor talking to a family about the BRCA gene, it’s all in the spirit of education,” explains Reiser. “That’s a huge part of the training. We look at adult education models, health literacy and numeracy, and other facets of communicating technical information so patients and families can understand the information and make decisions based on their unique circumstances.”
Candidates accepted into the Genetic Counselor Training Program must have participated in activities related to counseling or advocacy that demonstrate their interpersonal skills and ability to build strong one-to-one relationships. This type of background helps prospective students fully understand what it means to participate in a professional “helping” relationship, Reiser notes.
Adamsheck gained this type of experience during college by working in adult foster care homes for individuals with mental illness and as a women’s advocate in a domestic violence shelter.
“‘Soft skills’ are just as important as ‘hard skills,’” explains Reiser, adding that the best way for students to understand what patients and families really need is by working with individuals who have a genetic condition, chronic illness or intellectual challenge.
To underscore this, the School of Medicine and Public Health’s Genetic Counselor Training Program is the only such program in the United States to require all students to participate in the national-level Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program; one such program is available at the UW-Madison Waisman Center.
Developed to support long-term, interdisciplinary training, this program aims to improve the health of infants, children and adolescents with disabilities by preparing trainees to assume leadership roles in their field, ensuring high levels of clinical competence.
Collectively, the nation’s 43 LENDs share information and resources to maximize their impact. Together, they address national issues of importance to children with special health care needs and their families.
At the Waisman Center, a particularly meaningful LEND activity matches students with the family of a child with developmental disabilities for a semester to participate in routine family activities like going to the grocery store. Students learn firsthand about the challenges of taking a child with significant physical or behavioral problems to a store, such as how they get to and through the building. It becomes clear that a “quick trip to the store” is not possible for everyone.
Students see how other people act around the family and child, how parents may have to handle the child’s outburst in a public place, and the unique circumstances related to outings to school events, explains Reiser, adding that students gain a lot when they are able to visit a family at home, where they learn things one cannot get from a book.
Perhaps most importantly, notes Reiser, they learn that their mentor families are similar to other families in most ways, despite their challenges.
Because this profession changes so rapidly, the training program is preparing professionals for an always-evolving workplace. Its students gain ample exposure to highly developed medical specialties such as cardiology, oncology, ophthalmology and prenatal care, in addition to working directly with clinical geneticists.
“We stress education skills, interprofessional and interpersonal skills, and critical-thinking skills that students need to complement the content they learn,” says Reiser. “Our students become lifelong learners.”
And as genetics has come to the fore in health care, counselors have more direct encounters with health care delivery systems, such as working with and influencing insurance companies that genetic and genomic testing is important and valuable.
Calling upon his 25-years of experience in this field, David Wargowski, MD ’85, says, “Genetic counselors have been on the vanguard of working with insurance companies and providing the rationale for convincing them to authorize and cover the cost of genetic testing. It’s a huge challenge right now because we’re poking into new areas, and we must explain how an innovative test that costs several thousand dollars is going to help improve medical care for the individual.”
It certainly helps that sequencing a genome today costs about $2,000 rather than the higher price tags seen in the past. But as tests become more common, insurance representatives still need to know they’re saving money and improving care with a test rather than crossing their fingers.
“One of our roles is to generate enough data to demonstrate that these tests are valuable and that they actually do what we presume they will do. This allows us to streamline preventive care and save money through various means, ideally by improving the quality of care over time,” explains Wargowski, who is a professor in the Department of Pediatrics and a pediatric geneticist at American Family Children’s Hospital in Madison.
The School of Medicine and Public Health Genetic Counselor Training Program has one of the best reputations in the nation in terms of graduates’ success. All members of the program’s Class of 2014 landed jobs in the field within one month of graduation, and the Class of 2015 has entered an equally good job market.
Adamsheck, who will graduate in spring 2016, reflects, “As we continue to learn more about the impact of genetics on our health, this field has become integral to all aspects of health care. We now have access to a wealth of genetic information that can help us stay healthy. It is important for patients to actively investigate their health, and it’s vital that someone is there to help them navigate the process.”
And while scientists continue researching this complex system of genetic blueprints, regulators and co-regulators that are impacted by exercise, diet, the environment and hereditary factors, it takes uniquely trained counselors to help explain it — especially because the genetic map impacts both current and future generations.