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利益相关者对在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。

Stakeholders' Interest and Attitudes toward Genomic Medicine and Pharmacogenomics Implementation in the United Arab Emirates: A Qualitative Study.

机构信息

Institute of Public Health, College of Medicine & Health Science, UAE University, Al Ain, United Arab Emirates.

Department of Genomics and Genetics, College of Medicine & Health Science, UAE University, Al Ain, United Arab Emirates.

出版信息

Public Health Genomics. 2021;24(3-4):99-109. doi: 10.1159/000513753. Epub 2021 Mar 17.

Abstract

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.

摘要

背景与目的

描绘利益攸关方的权力、利益和立场是实施基因组医学的基石。本研究旨在描绘阿拉伯联合酋长国(阿联酋)各利益攸关方的权力/利益,并探讨他们对紧迫的健康基因组学方面的态度。本研究的总体目标是为在阿联酋全面实施基因组医学和药物基因组学制定路线图提供便利,该路线图可能适用于世界各地的许多医疗保健系统。

方法

采用深入访谈的定性方法。通过该领域的专家确定了异质的利益攸关方。使用 NVivo 软件对数据进行了演绎和归纳相结合的分析。

结果

共进行了 13 次访谈。根据 Mendelow 矩阵进行映射后,我们将阿联酋的利益攸关方分为推动者、潜在者、捍卫者和冷漠者。大多数接受采访的利益攸关方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倾向于阐明对药物基因组学的需求。阿联酋的大多数利益攸关方都赞成为改善该国的遗传服务建立基础设施。来自保险部门的利益攸关方对基因组医学的成本效益持矛盾立场;大多数人关注基因组医学的法律和伦理方面,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系统地实施基因组医学。这可以通过让关键参与者(推动者和捍卫者)参与进来,并让潜在的利益攸关方参与进来并得到满足来实现。

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