July 7 2015 The Johns Hopkins Universitynational Human Genome Research Institute Genetic Counseling Training Program

The Johns Hopkins University/National Human Genome Research Institute Genetic Counseling Training Program

July 7, 2015

New technologies are commonplace in genomics. In recent years, new DNA sequencing methods have allowed clinicians to sequence large panels of genes when screening for various diseases or conditions. The use of these panels is introducing new uncertainties for those being screened. For example, a person with a strong family history of early onset heart disease goes to see a genetic counselor and opts for a multi-gene panel test to assess his or her risk. The person is found to have a genomic variant in one of the genes of uncertain pathogenicity, a common occurrence with panel testing. How does the genetic counselor help the person manage these results? Genetic counselors help people manage uncertainty and make informed choices. They do not only relay information, they also form therapeutic relationships with clients to understand their values and preferences, which is key to successful partnerships.

Since 1996, NHGRI, in partnership with Johns Hopkins University (JHU), has offered a unique program: The JHU/NHGRI Genetic Counseling Training Program (GCTP). The program focuses on education in cutting-edge genomics, in-depth psychological counseling training, and research skills for thesis development and execution. The GCTP aims to produce the next generation of leaders in the field. Graduates earn their degree from the Johns Hopkins Bloomberg School of Public Health.

One goal of the program is to prepare graduates to provide genetic counseling with an emphasis on the psychological and educational needs of their clients. Rotations are required so that the students can learn directly about genetic conditions, their impact on people and families, and the role of genetic counselors. A second program goal is to prepare graduates to conduct social and behavioral research related to genetic counseling, with a required thesis. Lastly, the program aims to enable its graduates to educate healthcare providers, policy makers, and the public about genetics, genomics, and related health and social issues.

The program is unique in its level of interactive and research-oriented coursework, which leads graduates to complete high-quality thesis studies that can be published. It has produced genetic counselors who are collectively broadening the scope of genetic counseling by contributing to research in the field. Additionally, program faculty members provide students with direct supervision throughout their graduate studies. These sessions offer students feedback based on audiotaped sessions with clients and on interventions, consistent with the development of counseling expertise.

Johns Hopkins Bloomberg School of Public Health provides an established academic home for the GCTP, while NHGRI provides leadership, a majority of the instruction, and funding. The program draws faculty from NHGRI and JHU, and includes tenured investigators, scientists, and healthcare providers. The genetic counseling coursework, student supervision, coordination of clinical rotations, and Accreditation Council for Genetic Counseling accreditation are overseen jointly by NHGRI and JHU. The GCTP is seen by many as an important effort to address new challenges resulting from genomic advances.

On left: GCTP students and recent alumnae. (Pictured left to right are Nina Harkavy, Jenn Kohler, Lydia Hellwig, Celeste D'Amanda, Devon Bonner, Katie Fiallos, Mike Setzer, Megan Bell, Marci Barr, Cari Young, Kyle Davis, and Claire Anderson).
On right: Rising second year students. [Pictured clockwise are Devon Bonner (top), Mike Setzer, Lydia Hellwig, Katie Fiallos, and Celeste D'Amanda].

The GCTP annually receives between 80 and 100 applications; 4 to 5 students are admitted each year, with a total of 69 trainees participating in the program since its beginning. In the past, approximately half of the graduates have gone to work in research settings, with the other half working in clinical settings. Recently, there has been an increasing shift to commercial settings, reflecting the growth of clinical genomics and genetics as a service industry.

Melissa Richter, a laboratory psychologist who founded the world's first genetic counseling graduate program, once said "When a genetic problem hits, it hits at the very gut of people, at the questions of what am I and what do I leave to the world. It requires so much intelligence to be able to deal with that." ¹

Genetic counseling as a discipline has been around for nearly 40 years. The JHU/NHGRI GCTP is leading the way in producing the next generation of leaders in the field and in preparing new genetic counselors for meaningful careers helping clients make informed choices about challenging genetic issues regarding their health and their genetic legacy. For more information, visit genome.gov/10001156/genetic-counseling-training-program/.

1. "Degrees Offered in Genetic Counseling," New York Times, Dec. 6, 1970, p.71.

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Posted: August 7, 2015