Celebrating the 25th Anniversary of the Genetics Counseling Training Program

Michelle Merrill, MS, LCGC, Co-Director 

Rebecca Darrah, PhD, Co-Director

This past fall, the Genetic Counseling Training Program at CWRU celebrated its 25th anniversary!  The master’s program, which was the 2nd genetic counseling program established in Ohio, welcomed its inaugural cohort of four students in the fall of 1998.  Since that time, 117 genetic counselors have graduated from the program, working in all specialties and subspecialties of genetics.  Graduates of a genetic counseling program must sit for a board exam following graduation, and our graduates have been extremely successful in passing the board exam, as well as securing a position in a location and specialty of their choice.

Traditionally, genetic counselors have been employed as health care providers in a clinical setting, helping patients and families understand the risk of a genetic condition, make informed decisions about genetic testing and medical care recommendations, and adapt to and understand both the medical and psychosocial implications of a genetic condition.  Some common areas of practice have included cancer genetics, prenatal genetics, and pediatric genetics.  As our knowledge of genetics and inherited conditions has increased, genetic counselors have also specialized in more niche clinical areas, such as ophthalmology, renal genetics, and cardiovascular genetics.  In addition to clinical care, about 1/3 of genetic counselors nationwide are employed in non-clinical genetic counseling positions, working for genetic testing laboratories, insurance companies, or in sales and marketing.  Our students are well prepared for any of these roles, as we are fortunate to have many excellent training sites available, including clinical training at the Cleveland Clinic, University Hospitals, MetroHealth Medical Center, and Akron Children’s Hospital, as well as many industry elective rotations. In fact, the extraordinary medical resources in Northeast Ohio are one of the aspects that set our program apart from others. Other unique aspects include our focus on research opportunities, our dual degree program with the Bioethics Department, and our innovative elective rotations that allow students to gain further focused experience in a few areas of their choice.

As the rapid advancements and changes in genetics over the last 25 years are celebrated, we asked one of the students in CWRU’s initial cohort, Rebecca (Becky) Darrah, PhD, MS, to reflect on what has changed in the field and the counseling program.  Becky is uniquely suited to answer this question, as she has been involved with the training program from the beginning – first as a student, as a clinical supervisor, as the clinical rotation coordinator, as an Associate Director, and now as co-director.  

Here is her perspective:

The Genetic Counseling Training Program has changed a lot in 25 years, primarily because the field of genetics has changed so much! While many of the principles of molecular genetics and counseling strategies have remained somewhat constant, approaches to genetic testing and diagnostics have evolved quite a bit. When I was a trainee, much of the focus of clinical genetics was on making an educated, informed clinical diagnosis and using genetic testing as a form of verification. A list of potential diagnoses was determined by careful examination of the family history, the dysmorphology of the patient and family, and the medical history and evaluation. Testing was strategized to begin with the gene most likely to be implicated. Each gene tested was analyzed by either Sanger sequencing or a mutation panel, and the results were clear: the person either carried a known pathogenic variant (we called them mutations back then!) that was specifically included in the analysis, or they did not. These tests were expensive and time-consuming; often taking months to get an answer. 

Now, the approaches to testing are very different. The advent of Next Generation Sequencing enabled many genes to be tested at once and within a few weeks. Genetic testing panels, consisting of hundreds of genes, were developed for general diagnoses or symptoms. Whole exome and even whole genome analysis became affordable and clinically available. Now, the issue has become one of interpretation: What did all of these identified variants mean? Is one of them (or several of them?) responsible for the clinical phenotype? Classes on variant interpretation were not part of my training 25 years ago, and now we spend almost eight weeks teaching the nuances of this type of testing approach. 

As I look forward to the next 25 years, I'm thrilled by another evolution we are finally seeing: gene-based therapies. This, too, was not part of my training, aside from the ethical discussion of some of the early failures in this area. In fact, we used to have whole classes dedicated to understanding the justification for genetic testing after a clinical diagnosis had been made since there was a common misconception that testing wasn't important if "there was nothing you could do." Now, there are enough examples of gene-based strategies for the treatment of diseases like spinal muscular atrophy, cystic fibrosis, sickle cell anemia, and cancer that we recently launched an 8-week course dedicated to genetic therapeutics.

I look forward to expanding that course as more treatments are approved! It is exciting to be a part of such a rapidly changing field, and I feel lucky to have seen the evolution of the CWRU Genetic Counseling Training program, from both the perspective of the student and the Co-Director, for over 25 years.”