By Scott Harris
To better serve patients of all backgrounds, Penn is leading a multi-university effort to increase racial and ethnic diversity in genetic counseling.
Chad was not yet a teenager when he made an emotional plea to his baseball coach.
He had a condition that caused his lungs to fill with blood. Medication helped manage the disease but led to weight gain and fatigue. He was being bullied as a result. Chad’s mother suffered from mental health issues serious enough that he lived with his grandparents. He had never met his biological father.
Chad needed emotional support as he sought to learn more about his condition and track down resources. Fortunately, his coach listened, and learned as well, so that he could provide appropriate emotional support. That coach was Avi Anantharajah, Chad’s teenage camp counselor. As he sought more information to help his young player, Anantharajah was taken in by the combination of biology and humanism he was suddenly providing. This in turn led him to the field of genetic counseling, and it became his life’s calling.
After graduating in 2021 from the Master of Science in Genetic Counseling Program at the Perelman School of Medicine, Anantharajah is now a practicing genetic counselor with the Cancer Risk Evaluation Program at Penn Medicine’s Basser Center for BRCA.
Genetic counseling is a young and growing profession, aiding patients with everything from pregnancy to prostate cancer.
As it stands, however, the workforce is overwhelmingly white and female, leaving under-resourced and diverse populations out of the loop.
“Patients who see a clinician of a similar race are more likely to experience higher-quality communication with their provider,” Anantharajah said. “This highlights the importance of improving minority representation within the genetic counseling workforce. It also highlights the importance of training clinicians to engage in practices that strengthen the therapeutic relationship between themselves and their patients, especially when factors that limit communication are present.”
A recent grant awarded to the Master of Science in Genetic Counseling Program at Penn Medicine will do just that, addressing the inequity by attracting, training, and supporting a more diverse genetic counseling workforce. This ultimately means reaching more people in need, especially in racially or ethnically diverse areas, where access and negative perceptions are common barriers to seeking help from a genetic counselor.
A Growing Profession
“Genetic counseling is a communication process for people who have genetic conditions or who might be at risk,” explained Kathleen Valverde, PhD, LCGC, director of the Master of Science in Genetic Counseling Program. “This is where people can come to learn more about genetic conditions and decide whether they want to have genetic testing. And if they are tested, they can learn more about the treatments or medical services that might be available to them.”
It is often challenging for patients to come to grips with incurable conditions. Genetic counselors step into that emotional breach, leading patients through often-complex processes with compassion and empathy.
“We help people adjust to their diagnosis,” Valverde said. “Genetic conditions are lifelong, and can affect family members as well, so patients need to have a good understanding about the inheritance of their condition. If they have genetic testing without pre-test counseling, sometimes people do not have enough information about the testing or their condition.”
This unique niche has helped make genetic counseling a growing profession. According to data from the National Society of Genetic Counselors (NSGC), the genetic counselor workforce increased from 1,155 in 1999 to 5,629 in 2021 – doubling since just 2010.
Despite this growth, the profession has struggled to find and attract diverse candidates, particularly among those underrepresented in genetic counseling. According to Valverde, there are several factors, including the cost of training, a relative paucity of programs, and difficulty navigating a complex application process. NSGC data show that in 2020 the genetic counseling workforce was 90 percent white. Only 2 percent of genetic counselors were Black, while 2 percent identified as Latinx.
Experts agree that genetic counseling can make a powerful impact in underserved communities, with clinicians who reflect that community’s demographic makeup. But this is easier said than done.
“There’s skepticism about testing and mistrust of the system in some racial and ethnic communities,” Valverde said. “They miss out on an opportunity or don’t know to seek it out. This could be partly due to the lack of providers who look like them, or who understand their social or cultural concerns.”
That’s something Isaac Elysee hopes to change. Elysee graduated from the Penn genetic counseling master’s program in 2021 and was originally motivated to study genetics by his father, who had sickle cell disease, a genetic condition common to the Black community.
“I was really interested in genetics from a young age,” he recalled.
“This was in large part because of my father. I felt that with genetic counseling, I can help people through sometimes difficult discussions. How you interact with patients of different backgrounds and beliefs is a really important part of what we do.”
Elysee is now a counselor at Penn Medicine in the Division of Translational Medicine and Human Genetics helping a wide range of patients with a wide range of genetic conditions.
“Some patients I interact with have dealt with health concerns for extended periods without a known cause,” he said. “Even if genetic testing is unlikely to find a cause for their symptoms, I can help by simply listening and empathizing with them about the difficulties or frustrations that these unexplained health concerns bring.”
A New Alliance
Genetic counselors who are Black, like Elysee, are rare today. But the new grant to the MSGC program Penn Medicine from The Warren Alpert Foundation is designed to change that.
The $9.5 million grant helped establish the Alliance to Increase Diversity in Genetic Counseling. With the Perelman School of Medicine leading the way, this new consortium will unite top programs across the Northeast, including at Boston University School of Medicine; Rutgers, The State University of New Jersey; Sarah Lawrence College; and the University of Maryland School of Medicine.
Each year for five years, 10 students from racially and ethnically diverse backgrounds will receive full tuition support and a cost-of-living stipend.
In addition, the Basser Center also provides a scholarship for a genetic counseling student from an underrepresented background.
“Recruiting and training underrepresented individuals in genetic counseling will increase the numbers of professionals in the field, leading to an increase in access to community-based genetic education and genetic counseling services delivered by individuals who reflect different populations,” said August Schiesser, executive director of The Warren Alpert Foundation.
Causes for Optimism
Genetic counselors from underrepresented groups are well-positioned to address systemic mistrust – and improve health and well-being – in these communities. The Penn program’s 2023 class is a step in the right direction, with 35 percent of its students hailing from underrepresented backgrounds.
“The efforts now to increase diversity in the field will hopefully go a long way to promoting trust among people,” Elysee said. “As long as you’re treating that person with respect and with an eye toward helping them understand what’s going on, you’ll be successful. All parts of the population do indeed have genetic disorders. They affect people of all backgrounds, all ethnicities, all religions. Genetic counselors can help, especially with patients who look like them.”