GENETIC COUNSELING IN THE MIDDLE EAST
Shruti ShenbagamiD, Alan TayloriD, Ruchi JainiD, Khalid Adnan FakhroiD, Fowzan Sami AlkurayaiD, Ahmad N. Abou TayouniD
Abstract
Genomic advancements have led to increased utilization of genetic testing in clinical care, yet barriers to accessing genetic counseling and genomics services remain, particularly in the Middle East where inherited diseases are highly prevalent due to consanguinity. Limited knowledge of healthcare professionals experiences in genetic counseling in the Middle East necessitates understanding their perspectives for better service improvement in the region. A survey of 32 healthcare professionals providing genetic counseling services in the Middle East explored provider experiences, patient attitudes and cultural/psychosocial factors related to genetic testing. Among the respondents, 21 providers (65.6%), caring for patients of multiple ethnicities, including Arabs, recognised that there are unique challenges to counseling between these patient groups. Thematic data analysis identified that higher levels of consanguinity and stoic nature of the people are unique cultural considerations for this region. Language barriers and limited resources were identified as genetic counseling challenges. Overall, patients in the region demonstrated good coping abilities with a genetic diagnosis. Eighteen responses (56%) highlighted an overall positive attitude, with increasing awareness and acceptance towards genetic testing in this region. This study highlights the need for further research and interventions to address the unique challenges and improve genetic counseling services in the Middle East. What is known about this topic?Genetic counseling is typically provided by geneticists and genetic counselors, but due to the limited numbers in the Middle East, this service is also provided by other physicians across various specialties. There is limited knowledge regarding the experiences of healthcare providers offering genetic counseling services in the Middle East and the specific challenges they face in this region. What this paper adds to the topic?Our study offers valuable insights into the perspectives of healthcare providers regarding patient attitudes, cultural considerations, and psychosocial factors in genetic testing, with the aim of improving genetic counseling services and enhancing patient outcomes. These findings, along with our recommended strategies shed light on the unique dynamics of genetic counseling in the Middle East.
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