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Stakeholders’ Interest and Attitudes toward Genomic Medicine and Pharmacogenomics Implementation in the United Arab Emirates: A Qualitative Study
Public Health Genomics ( IF 1.3 ) Pub Date : 2021-03-17 , DOI: 10.1159/000513753
Azhar T Rahma 1 , Iffat Elbarazi 1 , Bassam R Ali 2, 3 , George P Patrinos 2, 3, 4 , Luai A Ahmed 1, 3 , Fatima Al-Maskari 5, 6
Affiliation  

Background and Aim: Mapping the power, interest, and stance of stakeholders is a cornerstone for genomic medicine implementation. In this study, we aimed at mapping the power/interest of various stakeholders in United Arab Emirates (UAE) and exploring their attitudes toward pressing health genomics aspects. The overarching aim of this study is to facilitate the construction of a road map for the full implementation of genomic medicine and pharmacogenomics in the UAE with potential applicability to many healthcare systems around the world. Methods: A qualitative approach using in-depth interview was employed. Heterogeneous stakeholders were identified by experts in the field. The analysis of the data was a hybrid of deductive and inductive approach using NVivo software for coding and analysis. Results: 13 interviews were conducted. Following mapping the Mendelow’s matrix, we categorized the stakeholders in UAE to promoter, latent, defender, and apathetic. Most of the interviewed stakeholders emphasized the clinical demand for genomic medicine in UAE. However, many of them were less inclined to articulate the need for pharmacogenomics at the moment. The majority of stakeholders in UAE were in favor of building infrastructure for better genetic services in the country. Stakeholder from an insurance sector had contradicting stance about the cost-effectiveness of genomic medicine; the majority were concerned with the legal and ethical aspects of genomic medicine and had an opposing stance on direct-to-consumer kits. Conclusions: Implementing the Mendelow’s model will allow the systematic strategy for implementing genomic medicine in UAE. This can be achieved by engaging the key players (promoters and defenders) as well as engaging and satisfying the latent stakeholder.
Public Health Genomics


中文翻译:

利益相关者对阿拉伯联合酋长国实施基因组医学和药物基因组学的兴趣和态度:一项定性研究

背景和目标:绘制利益相关者的权力、兴趣和立场是基因组医学实施的基石。在这项研究中,我们旨在绘制阿拉伯联合酋长国 (UAE) 各个利益相关者的权力/利益,并探索他们对紧迫的健康基因组学方面的态度。本研究的首要目标是促进构建在阿联酋全面实施基因组医学和药物基因组学的路线图,并可能适用于世界各地的许多医疗保健系统。方法:采用深度访谈的定性方法。该领域的专家确定了不同的利益相关者。数据分析是演绎法和归纳法的混合,使用 NVivo 软件进行编码和分析。结果:进行了 13 次访谈。在绘制门德洛矩阵后,我们将阿联酋的利益相关者分类为发起人、潜在、捍卫者和冷漠。大多数受访的利益相关者都强调了阿联酋对基因组医学的临床需求。然而,他们中的许多人目前不太愿意阐明对药物基因组学的需求。阿联酋的大多数利益相关者都赞成为该国更好的遗传服务建设基础设施。保险业的利益相关者对基因组医学的成本效益持相反的立场;大多数人关注基因组医学的法律和道德方面,并对直接面向消费者的试剂盒持反对立场。结论:实施 Mendelow 模型将允许在阿联酋实施基因组医学的系统策略。这可以通过让关键参与者(发起人和捍卫者)参与进来,以及让潜在利益相关者参与进来并让他们满意来实现。
公共卫生基因组学
更新日期:2021-03-17
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