Graduate student’s upbringing inspires genetic counseling career

Shontiara Johnson is a second-year graduate student in Ohio State’s Genetic Counseling Graduate Program. Credit: Courtesy of Shontiara Johnson

As a young Black girl growing up in the heart of rural Arkansas, Shontiara Johnson saw firsthand what a lack of access to basic health care looked like. 

Inadequate resources at the small hospital in her hometown of Monticello, Arkansas, meant medevac flights were a common occurrence, transporting seriously ill patients to Little Rock, Arkansas, roughly two hours away.

Johnson, a second-year graduate student in Ohio State’s Genetic Counseling Graduate Program, said realizing that long medevac flights led to higher patient mortality rates inspired her pursuit of providing access to and understanding of medical care. 

“I wanted to be able to explain science to people at the health literacy that I was accustomed to in Arkansas,” Johnson said. “I wanted to know it so well that I could explain it to anybody, from a little kid to an adult, from a person who has a graduate degree, even a Ph.D., to a person who didn’t even finish high school.” 

Today, Johnson said she is in one of the most specialized fields in medicine — genetic counseling. She said she was drawn to the profession through a desire to combine her love of science with her passion for helping those in need. 

“I literally went to Google and put in a Google search to find ‘Social work plus science jobs,’ ” Johnson said. “I started reading up on it, I saw the courses that I would need to take and the job description and I just kind of fell in love with it.”

Johnson has continued to champion diversity and equality in health care through her research. She said her master’s thesis aims to determine if and how race, ethnicity and ancestral data is collected by genetic counselors to better understand the role they play in clinical encounters.

According to the Centers for Disease Control and Prevention, genetic counselors gather family and personal health history to learn if someone or their family member may have a genetic condition.

Jordan Brown, assistant director of the program and Johnson’s thesis adviser, said some genetic counselors fail to ask patients about their family history to look for specific genetic conditions, which can lead to important tests not being performed. 

“There have never been any studies that characterize what genetic counselors are doing when they collect this information, or how they collect this information,” Brown said.

According to the National Society of Genetic Counselors, 90 percent of genetic counselors in the U.S. are white, while only 2 percent identify as Black or African American. Johnson said she is keenly aware of this underrepresentation.

“People who look like me or have my descriptors, you don’t see them in genetic counseling programs,” Johnson said. “There are a lot of barriers for diverse or minority applicants to even just get into school.”

As part of the two-year program, students need to do full-time clinical rotations over the summer. To meet this requirement, Johnson was Color Health’s 2021 Genetic Counseling Summer Scholar, a new initiative that provides genetic counseling students with an internship opportunity and a $10,000 stipend.

Her writing impressed the team at Color Health, a health tech company that provides various health care services and screenings, so much that they invited her to work with them on a new initiative — the GC Immersive. The remote program at Color Health provides genetic counseling experience for graduate school applicants from underrepresented backgrounds.

“As an African American woman I have a different perspective compared to my peers about public health, access to health care and things like that,” Johnson said. “I want to take everything I’ve gone through, everything I’ve experienced, everything I’ve seen, and make sure that it’s better for the person that comes after me.”

Brown said Johnson has already exceeded that goal and is excited for what will come next.

“I’m so excited to see what she’ll contribute to this profession because there’s a lot that needs to change. And her voice will be, no doubt be, important in that change,” Brown said.