中东的遗传咨询:提供者对病人态度和文化挑战的看法。

IF 3.8 3区 医学 Q2 GENETICS & HEREDITY
Shruti Shenbagam, Alan Taylor, Ruchi Jain, Khalid Fakhro, Fowzan Alkuraya, Ahmad Abou Tayoun
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引用次数: 0

摘要

基因组学的进步使临床护理中更多地利用了基因检测,但在获得遗传咨询和基因组学服务方面仍然存在障碍,特别是在中东地区,由于血缘关系,遗传性疾病非常普遍。医疗保健专业人员在中东遗传咨询方面的经验有限,因此有必要了解他们的观点,以便更好地改善该地区的服务。作为一项试点,对中东地区提供遗传咨询服务的32名保健专业人员进行了调查,探讨了与基因检测有关的提供者经验、患者态度和文化/社会心理因素。在参与者中,照顾包括阿拉伯人在内的多种族患者的21名提供者(65.6%)认识到这些患者群体之间的咨询存在独特的挑战。专题数据分析表明,较高水平的血缘关系和人民的坚忍本性是该地区独特的文化考虑因素。语言障碍和有限的资源被确定为遗传咨询的挑战。总的来说,患者表现出良好的应对能力与基因诊断。18个答复(56%)强调了总体上的积极态度,对基因检测的认识和接受程度越来越高。这项研究强调了进一步研究和干预的必要性,以解决中东地区独特的挑战和改善遗传咨询服务。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Genetic counseling in the Middle East: provider perspectives of patient attitudes and cultural challenges.

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. As a pilot, 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 participants, 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 in the region. Language barriers and limited resources were identified as genetic counseling challenges. Overall, patients demonstrated good coping abilities with a genetic diagnosis. Eighteen responses (56%) highlighted an overall positive attitude, with increasing awareness and acceptance towards genetic testing. This study highlights the need for further research and interventions to address the unique challenges and improve genetic counseling services in the Middle East.

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来源期刊
Human Genomics
Human Genomics GENETICS & HEREDITY-
CiteScore
6.00
自引率
2.20%
发文量
55
审稿时长
11 weeks
期刊介绍: Human Genomics is a peer-reviewed, open access, online journal that focuses on the application of genomic analysis in all aspects of human health and disease, as well as genomic analysis of drug efficacy and safety, and comparative genomics. Topics covered by the journal include, but are not limited to: pharmacogenomics, genome-wide association studies, genome-wide sequencing, exome sequencing, next-generation deep-sequencing, functional genomics, epigenomics, translational genomics, expression profiling, proteomics, bioinformatics, animal models, statistical genetics, genetic epidemiology, human population genetics and comparative genomics.
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