Overcoming Barriers Faced by Hispanics Who Receive Genetic Testing
The Translational Genomics Research Institute’s (TGen) Center for Rare Childhood Disorders (C4RCD) conducts whole exome sequencing on children and their parents in search of a genetic diagnosis. C4RCD has enrolled over 500 families, of which 27% come from a Hispanic background, many of which speak only Spanish. TGen’s C4RCD hosted it’s first ever event held completely in Spanish, “Día Familiar Para Enfermedades Raras” on Saturday, July 14th 2018, dedicated specifically to our Hispanic families that enrolled in our studies. In the months leading to the event, the families were contacted by various methods of communication and were given all of the information regarding the event. The purpose of this event was to address common barriers faced by these Hispanic families and many of the challenges they encounter when participating in genetic testing. Some of the common barriers addressed were; education, language, financial, and lack of trust. The event consisted of scientific presentations, which included information about current and future research, different ways in which they can continue learning more about their child’s diagnosis, tools for connecting with other families that have children with rare disorders, and how to reach out to worldwide experts studying their child’s disorder. Local support groups were also invited to present on their resources available to these families. Additionally, the families were given information on what they can do after receiving their genetic results. Families were given ample time to ask questions. A tour of the TGen laboratories was provided for all of the families with detailed explanations at every stop. The event gave the families hope and comfort by addressing the challenges that this population encounters, while also allowing families to meet other families facing similar challenges, and providing a future direction for those who have received a genetic diagnosis and for those who are still waiting for one. The fact that 82 people attended “Dia Familiar Para Enfermedades Raras” showed the importance of having this event and the need to host it again in the future.