Center Training Program Empowers Genetic Counselors in Research
Duke University became home to the first Genetic Counselor Training Program of its kind to be established in an academic setting after receiving an award from the National Human Genome Research Institute in 2020.
Susanne Haga, Ph.D., associate professor of medicine, (General Internal Medicine), and Geoffrey Ginsburg, M.D., Ph.D., professor of medicine, (Cardiology), developed a proposal to embed more capable genetic counselors in genomic research settings by pairing participants with experienced mentors and genomic medicine research projects.
“While genetic counselors are uniquely positioned to provide clinical perspective in implementation research, their formal training does not include research experience” said Dr. Haga. “We aim to provide experiential-based and didactic training to enable participants to acquire the skills needed to thrive in a research environment”.
The first trainees to participate in the program, genetic counselors Azita Sadeghpour, Ph.D., and Ruth Lehan, are currently engaged with Lori Orlando, M.D., associate professor of medicine (General Internal Medicine)’s Moonshot project, which aims to create a clinical model that improves identification and management of patients at risk for hereditary cancer syndromes.
Dr. Sadeghpour also partners with Dr. Orlando on an Implementing Genomics in Practice Pragmatic Clinical Trials Network (IGNITE PTN) study, A Depression and Opioid Pragmatic Trial in Pharmacogenetics (ADOPT-PGx), which explores the efficacy of genotype-guided drug therapy. She additionally aids the Chair of the Department of Medicine, Kathleen Cooney, M.D., on her Analysis of Germline Mutations Contributing to Prostate Cancer in African American Men.
Sadeghpour noted that her experience in the program, “has opened many doors" and enabled her to "better understand the scientific world of research”.
Lehan works with Andrew Landstrom, M.D., Ph.D., assistant professor of pediatrics and cell biology, in developing best practices for digital patient education and informed consent through implementing creative communication techniques, such as infographics on electronic forms, to simplify scientific information for pediatric patients as a part of Dr. Landstrom’s study The Genetic and Molecular Basis of Sudden Cardiac Death – Predisposing Diseases and Congenital Heart Conditions. Additionally, she is gaining exposure to the management of large trials with Dr. Lori Orlando’s project Improving Identification and Healthcare for Patients with Inherited Cancer Syndromes: Evidence-Based Emr Implementation Using a Web-Based Computer Platform.
“This training program builds upon genetic counselors’ expertise in informed decision-making and communication of complex information to patients,” said Haga. “The projects they are working on build upon their clinical experiences”.
Lehan worked in a clinical cardiology setting for three years prior to enrolling in the program. While she found her work to be fulfilling, she sought extra training because she wanted to contribute to the field in a way that would reach beyond the temporal confines of her day-to-day patient care.
“I’m getting a lot of skills that will help me engage in research outside of the program in the future,” Lehan said. “My goal is to understand all of it.”
In the last few months, she has learned a myriad of tools fundamental to research including developing a research question, clarifying an aim, writing the multifaceted components of a grant and using new technologies. Soon, she will assist in piloting a study for the first time.
According to Lehan, the CAGPM Genetic Counselor Training Program is essential to breaking down barriers that genetic counselors experience when attempting to transition to a research-oriented career. Before enrolling, she didn’t know which types of grants may be available to professionals like her or even where to begin looking.
“You don’t always know where to start. And if you don’t understand the multitude of things that go into research, it’s easy to drop a ball somewhere and not be able to move forward,” she said.
CAGPM’s program directly alleviates this problem, giving counselors who have enthusiasm and ideas, but not necessarily the experience to enact them, the skills and framework to do so.
“Once you’re in the world of scientific research, it can be tough”, Lehan said. “You’re going to have to deal with people telling you that your ideas aren’t good and that you need to change everything.”
For Lehan, then, the program’s built-in mentorship is a crucial support system, keeping her motivated to continue contributing to genomic medicine research.
“This has been a great experience and I’ve been in it for the experience. It’s been tough, exciting, a challenge,” Lehan said. “And very, very worth it.
For more information on this program, visit precisionmedicine.duke.edu or contact Ashton Spicer at firstname.lastname@example.org.