Readiness for Parkinson's Disease Genetic Testing and Counseling in Patients and Their Relatives in the Dominican Republic

Abstract

Genetic testing for Parkinson’s disease (PD) is increasing globally, and genetic counselors serve as a resource to provide information about PD and genetic testing. However, genetic counseling is not yet recognized as an independent profession in most of Latin America and, despite PD having the highest incidence among Hispanic populations, studies have found that Hispanic individuals are underrepresented in PD and genomic research. Understanding what Hispanic individuals know about PD, genetic testing for PD, and their interest in speaking with a genetic counselor is crucial when assessing readiness for genetic testing and counseling. In this cross-sectional study, a mixed-methods survey was distributed to people with Parkinson’s disease (PwP) and their unaffected biological relatives in the Dominican Republic (DR). Survey questions assessed genetics knowledge, attitude toward genetic testing, and interest in genetic testing and counseling. Most participants (69%) scored the maximum on the attitude scale, indicating an overall positive attitude toward genetic testing. Furthermore, 95% indicated interest in genetic testing for PD, and 98% were at least somewhat interested in meeting with a genetic counselor. The mean PD genetics knowledge score was similar to previously published data. Through free responses, participants expressed a desire to know more about PD treatment and management, prevention, cause, and their personal risk for PD. These results emphasize the importance of building genetic testing and counseling capacities in low- and middle-income Hispanic countries like the Dominican Republic.