Editor’s Note: Chronic conditions and rare diseases don’t discriminate, Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a journey to share, reach out to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.

It is no secret, unfortunately, that profound racial and ethnic health disparities exist within the United States’ healthcare system. These disparities may take on different forms, from higher rates of premature death and maternal mortality rates to higher instances of chronic illness. Ronya Nelson saw these inequities in another realm: genetic counseling. To combat misinformation, barriers to care, and ingrained inequities, Ronya launched “DNA in Color.” Through this platform, she is not only documenting her own journey towards becoming a genetic counselor, but is sharing information to close the diversity gap within genetics, genetic testing, and genetic counseling.

For many patients, especially those of color, having a provider of a similar background can help them to feel heard and understood. This can increase trust in healthcare, increase the depth of information provided, raise awareness of genetics, and encourage people to enter into clinical research. Having research insights from people of various racial and ethnic backgrounds provides a roadmap towards achieving high-quality care for all. But when only 2% of genetic counselors are Black, 2% are Hispanic, and under 0.5% are American Indian or Alaska Native, the diversity within genetic counseling is limited – and so is the ability to reach patients.

Recently, I sat down with Ronya to discuss what factors led her to pursue genetic counseling, the genetic disease prevalence in communities of color, why she launched DNA in Color, and her hopes for the future of healthcare equity.

Ronya’s Story

For Ronya’s entire life, she had wanted to become a veterinarian. She went to school to earn her B.S. degree in Biology, while also building her experience in the field. As Ronya explains:

I pursued veterinary medicine for so long, interned at local shelters, and even had an internship at Zoo Atlanta. But after a horrible experience, I kind of switched gears. I began trying other avenues, like dentistry, but nothing really struck me.

Eventually, Ronya found her home within the laboratory setting as a Microbiology Laboratory Technician. Within her job, she tests client samples for different bacteria. However, her time in the laboratory also stoked another interest: genetics. Ronya explains:

I took a genetics course in undergrad and was fascinated by it, but never pursued it any further. When I joined the microbiology laboratory, I learned that there was a genetics laboratory one floor down. I was intrigued. It really gave me the push to begin looking more into genetics, careers, possible outlooks, and what is lacking in the field. This is how I came across genetic counseling.

What is Genetic Counseling?

The Centers for Disease Control and Prevention (CDC) explains that genetic counseling:

gives you information about how genetic conditions might affect you or your family. The genetic counselor will collect your personal and family health history [and] can use this information to determine how likely it is that you or your family member has a genetic condition.

In short, genetic counseling – and genetic counselors – can help empower individuals to understand their genetics and how it can impact their lives. Outside of collecting history, genetic counselors can provide health risk assessments, educate people on different resources or disease management, and counsel their patients. In Ronya’s case, she found herself drawn to genetic counseling because:

There are not many genetic counselors who are women or people of color, and especially not women of color. I want to make a difference, provide a different face, and make others feel comfortable. Right now, there are a lot of groups that have been historically underrepresented in healthcare and are now understandably mistrustful of the system. I want to make sure that all voices are heard.

Currently, Ronya is taking additional classes to help prepare her to pursue a graduate degree in genetic counseling. She is beginning the application process and learning as she goes. Part of this journey was launching DNA in Color to raise awareness and inform people about genetic counseling.

Launching DNA in Color

At first, Ronya was unsure about starting DNA in Color. She shares:

I find it a little difficult to talk with peers about this, as not many people know much about genetics. There is so much to unravel and learn, but so many communities and people are left out of this discussion. Since it isn’t normally talked about, and a lot of elders are either stuck in their ways or just don’t trust the system, I was worried that people wouldn’t find DNA in Color to be a valuable resource. But I believe that there has to be a way to make genetics more prevalent and approachable, and I believe it starts with these conversations. With outreach. With being more involved, finding ways to be a resource for my community. I want to make sure that people feel safe and welcomed in these spaces.

The goal of DNA in Color is to bring awareness to diseases and conditions that are more common in minority groups, and to share a greater awareness of genetic testing. She explains that some of her own health conditions encouraged her to speak up and to learn:

Hyperthyroidism runs in my family so I was always thinking, ‘Is this something I should know more about?’ High blood pressure also runs on my maternal and paternal sides, which I unfortunately inherited at the age of 21. I knew that I was high risk, but I was still devastated. I didn’t think that it could happen to me, but I realized that there were other factors in my life that increased my own risk. As soon as I found out, I knew that I needed to make a change. High blood pressure is my carbon monoxide; it is boundless, unrecognizable, and terrifying.

Four years later, Ronya has lost over fifty pounds, changed her diet, and slowed the progression of her high blood pressure. She says:

Inheriting a condition is not solely based on genetics. There are also environmental and even social factors that mitigate risk of developing something. So what you have in your genes will always be there, but there are other things you can do to decrease risk or stop progression.

As DNA in Color grows, Ronya hopes to – in the future – launch a podcast that would allow her to speak more about some of these conditions in detail.

Join us in Part 2 as we discuss other conditions that are more common in minority communities, barriers to care, and the steps needed to overcome these barriers.