Dr. Monica Ferrini (center), dean of the College of Science and Health at Charles R. Drew University (CDU) of Medicine and Science, stands with students. CDU and the nation’s three other historically Black medical colleges are partnering with CZI to advance genomics research.
Genomics research accelerates our understanding of human biology — leading to advanced and tailored prevention strategies and treatments for human disease. While progress in genomics continues, there are gaps in knowledge that the scientific community is working to address.
Our genomes are more than 99.9% identical. Yet even with this degree of similarity, enough differences exist that using only a few genomes to create the “standard” reference genome used to identify genetic abnormalities has led to difficulties in our ability to understand the genetic architecture of human disease fully.
Traditionally, genetic studies of human disease have been predominantly based on people of European ancestry. But now, efforts such as All of Us and the pangenome are underway to address the gap in our understanding of human variation across all ancestries to make genomics more representative of all communities across the globe, ultimately ensuring everyone can benefit from breakthroughs in the field.
This includes Accelerate Precision Health. Launched by CZI in 2022, the program supports genomics research led by historically Black medical colleges in the U.S., including Charles R. Drew University College of Medicine (CDU), Howard University College of Medicine, Meharry Medical College, and Morehouse School of Medicine.
With the partnership, each institution is taking a strategic approach to addressing gaps in genomics.
One of the primary goals of CDU’s work in Accelerate Precision Health is to create a Master of Science program in genetic counseling, a field lacking diversity as with other areas of genomics.
Through its efforts, CDU wants to create more pathways for people from underrepresented communities, including Black people and other people of color, to pursue a career in genetic counseling.
“Being entrusted to start this program is an honor. It’s really meaningful to me because I think genetics belongs to everybody,” says Dr. Raluca Kurz, who serves as program director of CDU’s genetic counseling program.
We recently spoke with Dr. Kurz to learn more about CDU’s focus on genetic counseling and its progress as part of Accelerate Precision Health. Read on for key takeaways on why increasing diversity in genomics and genetic counseling is important.
Explaining Genetic Counseling and Why It Is Important
Genetic counseling provides information and support to people who have or may be at risk for genetic disorders, as defined by the National Institutes of Health.
“Genetic counselors are trained to understand the inherited components across the spectrum of most human disease, assess the risk of having an inherited component for that particular disease, educate the patient, and then walk the patient through the genetic testing process from beginning to end,” explains Dr. Kurz.
The field emerged after the discovery of the structure of DNA, as researchers and medical professionals sought methods for sharing newly available information about genetic contributions to health conditions with patients. In 1969, Melissa Richter launched the first master’s level training program for genetic counseling at Sarah Lawrence College in New York. Joan Marks, who became director of the program in 1973, further evolved the field with her focus on providing patients with compassionate care while also deciphering complex science.
Barriers Contributing to the Lack of Ethnic and Racial Diversity Among Genetic Counselors in the U.S.
With increasing demand for genetic expertise, the need for diversity in the field — across race, ethnicity, gender, sexual orientation, immigration status, physical disability, and socioeconomic status — is essential.
“It’s crucial to narrow the gap. That is why I’m here,” says Dr. Kurz. “It’s one of the great failures of the healthcare system that we have not been able to do this appropriately,” she adds.
Furthermore, preparing a genomics workforce that is readily equipped to understand different cultures and languages reinforces trust within communities, decreasing health disparities and improving health outcomes for these communities.
As with other aspects of genomics and precision medicine, achieving greater diversity in genetic counseling requires acknowledging historical and systemic barriers. According to the American Society of Human Genetics, “Historically, the science of genetics has been misused by some to proclaim false biological distinctions between groups and to justify abhorrent practices.”
Instances of research and medical malpractice and unethical behavior have contributed to a sense of distrust of scientific research institutions among some members of underrepresented communities, including Indigenous populations, Black communities, and immigrant and refugee communities.
A practical approach for building trust is creating more opportunities for people from diverse groups to lead in genetics and genomics research. That starts with exposure, says Dr. Kurz.
“I’ve tried to unpack this working at CDU. How do I get to people who would love genetics before they even get there?” she explains. “Because by the time you graduate from undergrad, you have to have taken all these prerequisites to be able to go to medical school, nursing school, or genetic counseling school.”
Dr. Kurz suggests more outreach to a diverse array of students beginning early in high school, adding, “You plan early so that when you graduate, then you can just jump into whatever it is that you want to do.”
How Expanding Genetic Counseling Helps Further the Goal of Accelerate Precision Health To Increase Genomics Research Capacity
Dr. Kurz emphasizes the importance of genetic counselors in bridging the gap between scientific research and patient care. She says genetic counselors are “translators” who can take complex genomic information and make it understandable for patients. This is especially important in the field of precision medicine, much of which is based on genetic information, where research is rapidly advancing and discoveries are being made all the time.
“So with any type of genomic research program that is clinical in nature,” Dr. Kurz says, “it is my strong belief that you should have a genetic counselor on staff because that genetic counselor brings a unique perspective as to how what you’re doing in this lab is going to change somebody’s life down the road.”
Genetic counselors also have the unique ability to counsel patients about the psychological implications of genetic testing. This allows them to provide patients with support and guidance as they grapple with the emotional challenges of genetic testing.
Dr. Kurz says, “We’re trained to diagnose and refer, but also we’re trained to be patient advocates, to bring the patient perspective to whoever needs to hear it.”
Milestones CDU Has Achieved as Part of Accelerate Precision Health
For Dr. Kurz, one of CDU’s most significant milestones is progress toward a critical goal.
“Our candidacy application for a master’s in genetic counseling was approved,” she shares, “It usually takes a year and a half. So it’s a big deal.”
The next step for CDU will be submitting the new program application, which they hope can be approved as early as Fall 2024.
Beyond this progress, Dr. Kurz highlights another accomplishment that holds broader significance: forging ties and liaisons with Martin Luther King, Jr. Community Hospital — a public hospital directly across from CDU’s campus in Los Angeles, California.
“There have always been connections through nursing,” says Dr. Kurz of ties between the hospital and university, “but not in genomics or research.” This collaboration, she believes, unlocks immense potential: “Through [MLK Community Hospital’s] input into Department of Health Services decisions, CDU and precision health can truly influence policy that would affect all Angelenos.”
The Benefits of Pursuing a Career in Genetic Counseling
Dr. Kurz says her path toward a career in genetic counseling started during an undergraduate genetics course. She fell in love with genetics in 1989 during her first year at university. Later, she pursued a master’s in genetic counseling at Sarah Lawrence College. After decades in the field, Dr. Kurz’s passion for her profession has not dimmed.
“I talk to patients every day, and I feel lucky and blessed that I can be part of their journey,” she says.
Her focus now is to broaden participation in and access to genomics research to one day ensure the benefits of genomics are accessible to everyone.