Genetic counseling in the middle east

medRxiv (Cold Spring Harbor Laboratory)(2023)

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摘要
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. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This study did not receive any funding ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The Institutional Review Board at Mohammed Bin Rashid University reviewed gave ethical approval for this work (IRB-2023-152). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes
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关键词
genetic counseling,middle east
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