Genetic Counseling Services for Refugee Populations
By Dina El Achi, MS, CGC
It’s no secret that various patient populations have unique needs based on particular cultural traditions, norms, and historical relationships with the medical field. This is especially prevalent within patient populations with language barriers, and more so in those who have been displaced from countries they previously counted as home – refugee populations.
Texas is no stranger to refugees. Cities all across the state have had waves of newcomers, especially over the last decade or so, as sociopolitical climates in the Middle East have become increasingly dangerous for families who subsequently seek asylum in the United States.
Dina El Achi on the steps of the Cullen Building at Baylor College of Medicine where she completed her genetic counseling training
As an immigrant to the United States myself, I can only speak to a few shared experiences with these families. Culture shock is very real, survivor guilt even more so. Language barriers never fully disappear and the ache for home is a grief in its own right. However, I was blessed not to have to leave my home overseas under the duress of war or persecution, so my understanding of the refugee experience is limited, to say the least.
10 years into living in Texas and a year into my first job as a pediatric genetic counselor in San Antonio, I am still surprised at how frequently I find myself sitting across from a refugee family in a genetic counseling session, completely at a loss for how to care for them well. My coworkers and I have noticed a consistent pattern of sorts, a series of unfortunate circumstances that although not unique to this population, are certainly prevalent within it. These patients are invariably of lower medical literacy and socioeconomic background. They often have limited proficiency in their own language, let alone in English. They are often struggling to put the next meal on the table, so high-level medical care is out of the question. They worry about their children like any of us would, but also carry the burden of loved ones lost in war, or perhaps worse, still living in war-torn areas. They never had to fight for quality of life; they were too focused on fighting for life itself.
My team at Christus Children’s and I have spent countless afternoons trying to find local resources that would meet our patient’s needs. There are some fantastic non-profit and governmental organizations working tirelessly to support these families when they first get to the U.S., but what they need next is a dedicated team of individuals who are well-versed in the U.S. medical system and are able and committed to being a voice and advocate until the families can do that for themselves. We need accurate and well-vetted genetic testing resources, patient-friendly resources, and support groups in a variety of languages. We need genetic counseling graduate programs to take the time to teach students about the complexities of generational trauma, culture shock, and cultural competency training for working with refugee populations across all genetic counseling specialties.
In light of all that, I wanted to share some resources that might be helpful to keep on hand as we encounter patients in clinic:
Refugee Services of Texas is a “state-wide organization working to help resettle refugees, asylees, individuals with Special Immigrant Visas, Cuban-Haitian entrants, Central American minors, survivors of human trafficking, and other vulnerable populations. In addition, they work to facilitate partnerships with host communities to build a welcoming environment.”
Texas Office for Refugees is the Office of Refugee Resettlement’s Replacement Designee and State Refugee Coordinator’s Office for the state of Texas, responsible for coordinating the state’s refugee services. They provide short-term cash assistance for eligible individuals pursuing employment and self-sufficiency, medical assistance upon arrival in the U.S., and various other support services.
Office of Refugee Resettlement provides programs and services organized by city.
Texas Office for Refugees - Refugee & Asylee Services Providers in Texas (2022) lists services available for refugees based on city and provider type.
In addition, below are disease-specific resources in different languages and patient-friendly layouts:
UNIQUE Rare Chromo Disorder Guides (translations available)
I hope this provides fellow GCs with useful resources - I thought it might be worth sharing with a community with diverse views and hopefully, equally diverse solutions. However, these are not thoughts I came up with on my own. My fellow genetic counselors at Christus Children’s have been pivotal in opening my eyes to these issues and sharing their priceless insight and advice, and for that, I’m so very grateful.