DNA in Color: How Ronya Nelson is Working to Close the Diversity Gap in Genetics (Pt. 2)

Before you read, don’t forget to check out Part 1 of our interview! In Part 1, we discuss Ronya’s story, genetic counseling, and why she chose to launch DNA in Color. Today, we’ll discuss conditions that are more common in communities of color, barriers to care, and potential solutions to overcoming these barriers. 

Other Conditions

Other conditions that disproportionately affect people of color include sickle cell disease (SCD) and sickle cell anemia, type 2 diabetes (T2D), and systemic lupus erythematosus (SLE). While SLE is not considered a genetic disorder, but an autoimmune one, there does seem to be some sort of familial pattern and history that could be explored further. For SCD and T2D, Ronya shares:

“There are generations of people who do not know what their sickle cell trait status is because we didn’t track those years ago. This is where having that open discussion and awareness of genetics would come into play. A person can carry the trait that causes sickle cell but will not develop SCD, though they may be at an increased risk of having a child with that disease.”

“If we dig even deeper, the SCD patient blood and donor blood must match or else the immune system rejects the donor blood. This is because African-Americans have unique structures on the blood cell that most closely match between donors. For T2D, it has not only genetic but environmental contributions that increase the risk factors. For example, an individual that lives in an unsafe environment or neighborhood may not get enough physical activity, increasing the risk of obesity and thus T2D, whereas people whose neighborhoods have open spaces may be better suited to reduce their risk.”

Learn more about sickle cell disease.

Barriers to Care in Communities of Color

Social determinants of health are factors, elements, and conditions in places that people live and work that affect health and health outcomes. These include workplace conditions, education, access to care, income, and community. When evaluating these social determinants of health, barriers to care in certain communities begin to emerge.

When asked what she believes the biggest barriers to care are, Ronya says:

“I would say financial and socioeconomic issues would be a big thing, alongside the lack of knowledge within certain communities. If people cannot afford doctors and testing and medication, they can feel isolated or not want to pursue care. I also believe that the field of genetics, and healthcare as a whole, doesn’t take minority groups seriously. When testing for breast cancer, white women are more likely to get recommended for BRCA gene testing even though African-American women are more likely to be diagnosed at later stages and have more difficult-to-treat cancer. Black men die from cancer at nearly double the rate of white men. And Black women are anywhere from two to six times more likely to die during labor than any other race. That’s one of the reasons I would like to do more genetic counseling on the prenatal side.”

But how can we overcome these barriers? One of the first steps is better understanding the history of genetics and healthcare – while simultaneously acknowledging its shortcomings. For example, Ronya explains that the history of genetics stems back to Africa and that there is a lot more information that can be gleaned from African-American genes. However, there has not been a lot of transparency in healthcare throughout the years. Think about the horrors of the Tuskegee Syphilis Study in which participants were treated unethically. Ronya says:

“I want to build trust with my communities and other historically marginalized communities. This requires acknowledging that the history behind a lot of historical experimentation and research was bad. The history was incredibly harmful. To overcome this, we have to begin by understanding how and why people don’t currently trust the system. I hope that through this, we can encourage more people of color to contribute their genes or pursue genetic testing. They can make a huge difference in so many communities.”

Overcoming Barriers

Another way to overcome some of these inherent barriers is working towards cultural inclusion in healthcare and beyond. Ronya explains that many companies feel that having one or two people of color fits the need for inclusion and representation. But she argues:

“That is representation but not of an entire population. The first step is having more diversity within a company or research study. Having inclusion is the ability to speak up, to give feedback in rooms where you’re not often included. When I become a genetic counselor, I want to relate to the family sitting across from me and let them know that they’re safe. I want to provide transparency, build trust, and share that this isn’t as scary as they think. In healthcare as a whole, I think that really centering diversity and inclusion in all aspects of the care experience is incredibly necessary.”

Ultimately, Ronya’s goal is to close the diversity gap in healthcare; this is what she believes is her calling, and we are excited to see the ways in which she’s able to help groups to overcome barriers and improve health outcomes.

“We can figure out rare diseases and mutations and variations. Genetics isn’t scary. I want people to know that their voice – and their genes – matter. Together, we can make that change, prevent disease, and create a more equal and equitable health environment.”

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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