The Importance of Diversity in Genetics Research: A Focus on South Carolina

When Lee Moultrie strolled into the dental clinic at the Medical University of South Carolina, clad in a vibrant blue pullover with “In Our DNA SC” embroidered on it, he became a walking billboard for a groundbreaking genetics research study. Two Black women approached him with questions, sparking a conversation about the importance of representation in research.

Moultrie, a health care advocate and participant in the In Our DNA SC study, seized the opportunity to encourage more Black individuals to enroll and contribute their DNA. He keeps brochures about the study in his car and at the barbershop he frequents, actively working to address the longstanding issue of underrepresentation of Black people in genetics research.

A Call for Diversity

Project leaders at the Medical University of South Carolina expressed a desire to enroll participants that mirror the demographic diversity of the state, where nearly 27% of residents identify as Black or African American. However, current participation rates fall short of this goal, with only about 12% of participants identifying as Black.

Research shows that the lack of diversity in genetics research can have significant implications for health care outcomes. The majority of genomics studies conducted to date have primarily involved participants of European descent, leading to a limited understanding of how genes impact health risks across different populations.

The Impact of Precision Medicine

Precision medicine, which considers an individual’s DNA, environment, and lifestyle in disease diagnosis and treatment, relies on diverse genetic data to be effective. Without representation from various racial and ethnic groups, there is a risk of misdiagnosis and inaccurate treatment strategies.

For instance, a study highlighted how some Black patients were misdiagnosed with a heart condition due to genetic variants more common in their population. Including diverse populations in genetic research can prevent such misclassifications and lead to more tailored medical interventions.

Efforts to Improve Diversity

Recognizing the importance of diversity in genetics research, initiatives like the “All of Us” program at the National Institutes of Health aim to build a diverse health database by analyzing the DNA of over 1 million individuals nationwide. By strategically partnering with community organizations and health centers, these programs have successfully enrolled participants from underrepresented groups.

In South Carolina, the NIH collaborates with health centers like Cooperative Health to recruit diverse participants for research projects. This partnership leverages trust within the community to encourage participation and promote better health outcomes for future generations.

Challenges and Progress

While efforts to increase diversity in genetics research are ongoing, challenges remain. In our DNA SC has made strides in recruiting participants, but more work is needed to achieve full representation. Strategies like in-person community events have proven effective in engaging diverse populations and expanding the reach of the study.

By actively involving individuals from all backgrounds in genetics research, we can pave the way for more personalized and effective health care interventions. The journey towards inclusivity in research is ongoing, but each step brings us closer to a future where genetic insights benefit everyone.

By Lauren Sausser, South Carolina Correspondent