Training Genetic Counseling Students in Clinical Research

12.14.20

As a partner with the University of South Carolina School of Medicine’s Genetic Counseling Program,
it’s a common sight to find one of their trainees present in a GGC clinic. Early in the program, they observe clinical visits, and as they progress
in their training, so does their participation in patient encounters, under the watchful eye of one of GGC’s board-certified genetic counselors.

While direct patient counseling is the most common area of practice for genetic counselors, many are also involved in less traditional areas such as laboratory
counseling, industry, or clinical trials.

GGC’s Jennifer Stallworth, MS, CGC, spent many years in a more traditional role as
a prenatal genetic counselor in GGC’s Greenville office. However, in recent years her area of interest has shifted to treatment and clinical research.
Stallworth now coordinates treatments for patients with lysosomal storage disorders and counsels patients involved in clinical trials and specialty
clinics for conditions such as Rett syndrome and Fragile X syndrome.

With the rapid advances in technology and research into potential treatments for genetic disorders, there are more disorders than ever with approved therapies
or open clinical trials.

“Genetic counselors are increasingly involved in helping their patients through the process of clinical trial participation, but this area of clinical
research has not been a focus within most genetic counseling training programs,” said Stallworth. “With the complexities of clinical trial participation
and case coordination required for these therapies and trials, the skill set of genetic counselors can be very beneficial.”
 
To help ease that training gap, Stallworth came up with the idea to develop a mini-rotation for genetic counseling students that focuses on treatment and clinical research. She received funding from Sanofi Genzyme, a biotechnology company involved in developing therapies
for rare diseases, to support this experience aimed at second-year genetic counseling students from programs across the US. The first class met in
October, and within about two weeks of the announcement, all available slots were filled.
 
Stallworth’s two-week rotation is completely virtual. Students are exposed to the grant process and are able to observe GGC case conferences and treatment
meetings. Each student selects a current treatment or clinical trial and completes an independent study of the development and utility of the therapy.
They also achieve certification in Human Subject Research and Good Clinical Practice which cover best practices and ethical considerations in medical
research.
 
“I appreciated the ability to do research on a clinical trial of my choosing as a way to understand the clinical trial process, informed consent, risks,
benefits, and psychosocial aspects,” said Emily Martin, a genetic counseling student at the University of Texas – Houston who was in the first class
in October. “I also learned about a less traditional role for genetic counselors that still involves clinical care, but in the context of research.”

 

Photo: The first mini rotation class discusses clinical trials on a Zoom call with supervisor, Jennifer Stallworth. Clockwise from top left: Molly Marra
– Boise State University, Stallworth, Enrique Lopez – Rutgers University, and Emily Martin – University of Texas – Houston

 

 

Meet Makayla Gunn

Makayla was diagnosed with Rett Syndrome in April of 2015 at the age of two. At about 18 months, we noticed she had started some repetitive hand motions, and her pediatrician was a little concerned that she did not have many words. She had learned some sign language, and was saying ‘mama’ and ‘dada’, but that was it. Then she suddenly stopped all of that. At her 2 year old check-up, the pediatrician referred us to BabyNet, SC’s early interve...

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