As a first-generation Mexican American, my personal experiences with health care disparities have driven my passion for advocating for underserved communities. Growing up on the South Side of Chicago, I saw how organizations offering low-cost medical care became lifelines for families like mine. These early experiences shaped my commitment to ensuring others, especially those from backgrounds like mine, have access to the best care possible.

In 2023, working as a genetic counseling assistant in Charlottesville, Virginia, with rural populations introduced me to new challenges. While I had experienced barriers related to low-income urban populations, I had not considered how different rural barriers to care would be. In rural regions, transportation, technology, and distance make health care even harder to access. While cost was a barrier for my family, we never had to travel far to see a provider. In Virginia, some patients lived hours from the nearest genetics clinic with no public transit options. Telehealth can help bridge gaps, but many rural families lack internet access, making virtual care unreliable.

A year later, I had the opportunity to work alongside another rural community, but this time as a genetic counseling student. In the Fall of 2024, I rotated at the Clinic for Special Children in Gordonville, Pennsylvania, and I learned new lessons while serving Amish and Mennonite patients, collectively referred to as the Plain community. These organized religious groups often reject modern conveniences like phones and computers. In contrast, those who embrace contemporary technology are referred to as part of the English community by Plain community members.

Few patients we saw through the Clinic for Special Children had cell phones; in some cases, patients had home phone lines where they could be contacted. Others, however, had no access to a telephone, and because of this, lots of meticulous planning went into scheduling a phone call via a local public telephone. This experience made me realize I had never stopped to ask patients if they had access to a phone. I assumed that, given this is the 21st century, everyone has a phone. Serving patients from Amish and Mennonite backgrounds made me realize that even people outside these communities may not have the financial means to have a cell phone.

Both of my experiences in rural communities made me reflect on how often health care providers assume all patients want or have access to phones or other technology. Even in Virginia, we would often call the number in patients’ medical records, only to learn that the number listed was not a private phone or that the line had been disconnected. Whether in Charlottesville, Virginia or Gordonville, Pennsylvania, rural patients face many obstacles to receiving care. Travel to a clinic can be difficult, with patients needing to arrange childcare, take time off work and commute long distances. In Virginia, some patients drove over an hour for genetics appointments, while Amish patients often paid high sums for drivers or traveled by horse and buggy.

Outreach clinics make a tremendous impact in the Plain communities by offering low-cost genetic testing and serving as a medical home base where patients can access both comprehensive genetics care and primary care. Its location reduces travel time and expenses, making care more accessible to rural patients. The low cost of testing and appointments provides affordable care to a population that is largely uninsured. The Clinic for Special Children is a powerful example of a clinic that has beautifully integrated itself into the communities it serves. This clinic has built a firm infrastructure catering its services to serve this rural, culturally distinct population on its terms. The outreach clinic is very beneficial, and working there holds new challenges and learning opportunities for staff members. Providers often travel far themselves to reach patients and learn to adapt their language and care to fit the local culture. In a conservative community like the Plain community, using words like “partner” as opposed to “husband or wife” was not encouraged. Although it was confusing for me to break away from the language taught in school, it became clear that this was critical. To be a culturally competent genetic counselor, embracing different communities involves mirroring their preferred language. 

Through my experiences as both a genetic counseling assistant and a graduate student at the University of Pennsylvania, I’ve gained a deeper understanding of the barriers rural patients face in accessing care. I am fortunate to be a student in the University of Pennsylvania’s Genetic Counseling Program and a Fellow in the Warren Alpert Alliance in Genetic Counseling, which has provided me with the resources to participate in these unique outreach opportunities. This fellowship has provided the chance to connect with other students from diverse backgrounds and reflect on how our identities shape us as providers. As a fellow, I meet monthly with other fellows to discuss outreach initiatives and hear lectures from professionals focused on patient education and community engagement. These monthly discussions have deepened my understanding of how ethnicity, culture, geography, and socioeconomic status influence health care experiences. Having a clear understanding of how a patient’s identity and resource accessibility influence decision making is essential when supporting patients through choices about genetic testing and medical care.  

All of my experiences have shown me that genetic counselors must work to overcome barriers people in rural communities face by expanding mobile genetic services, increasing funding for rural health care initiatives, or reassessing how we structure appointments to accommodate patient needs. True inclusivity in genetic counseling means considering all aspects of a patient’s life, including the unseen barriers they navigate daily. We and the institutions we work in must adapt and become more flexible in delivering care, from developing community-based outreach programs to building strong partnerships with local health care providers. Inclusivity also means being mindful of the cultural, technological, and financial challenges that many of our patients face when making decisions about their health care.

After all, genetic counseling is not just about conveying complex genetic information — it is about ensuring information is accessible, understood, and actionable, regardless of where someone lives or their financial situation. By bridging these gaps, we can ensure that all individuals, regardless of their background or origin, can access the care and support they need.

Acknowledgments

I am deeply grateful to Kathleen Valverde, PhD, LCGC; Rebecca Mueller, PhD, LCGC; and Susan Walther, MS, CGC, for their thoughtful feedback and guidance in reviewing this article. I would also like to sincerely thank the Warren Alpert Foundation Alliance in Genetic Counseling for their generous support and for providing opportunities that made this work possible.

References

Rhoads S, Rakes AL. Telehealth technology: Reducing barriers for rural residents seeking genetic counseling. Journal of the American Association of Nurse Practitioners. 2020;32(3):190-192. doi:10.1097/jxx.0000000000000373

Emmet M, Stein Q, Thorpe E, Campion M. Experiences of genetic counselors practicing in rural areas. Journal of Genetic Counseling. 2017;27(1):140-154. doi:10.1007/s10897-017-0131-6

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Photo by Randy Fath on Unsplash

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