利益相关者对基因组医学和药物基因组学在阿联酋实施的兴趣和态度:一项定性研究。

IF 1.3 4区 医学 Q4 GENETICS & HEREDITY
Public Health Genomics Pub Date : 2021-01-01 Epub Date: 2021-03-17 DOI:10.1159/000513753
Azhar T Rahma, Iffat Elbarazi, Bassam R Ali, George P Patrinos, Luai A Ahmed, Fatima Al-Maskari
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引用次数: 7

摘要

背景和目的: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。在本研究中,我们旨在绘制阿拉伯联合酋长国(UAE)各种利益相关者的权力/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在阿联酋全面实施基因组医学和药物基因组学的路线图建设,并潜在地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。异构利益相关者由该领域的专家识别。数据的分析是演绎和归纳的混合方法,使用NVivo软件进行编码和分析。结果:共访谈13次。在绘制门德罗矩阵之后,我们将阿联酋的利益相关者分类为促进者、潜在者、捍卫者和冷漠者。大多数接受采访的利益相关者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药物基因组学的必要性。阿联酋的大多数利益相关者都赞成在该国建立更好的遗传服务基础设施。来自保险部门的利益相关者对基因组医学的成本效益持矛盾的立场;大多数人关注基因组医学的法律和伦理问题,反对直接面向消费者的试剂盒。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。这可以通过吸引关键参与者(推动者和捍卫者)以及吸引和满足潜在的利益相关者来实现。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Stakeholders' Interest and Attitudes toward Genomic Medicine and Pharmacogenomics Implementation in the United Arab Emirates: A Qualitative Study.

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.

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来源期刊
Public Health Genomics
Public Health Genomics 医学-公共卫生、环境卫生与职业卫生
CiteScore
2.90
自引率
0.00%
发文量
14
审稿时长
>12 weeks
期刊介绍: ''Public Health Genomics'' is the leading international journal focusing on the timely translation of genome-based knowledge and technologies into public health, health policies, and healthcare as a whole. This peer-reviewed journal is a bimonthly forum featuring original papers, reviews, short communications, and policy statements. It is supplemented by topic-specific issues providing a comprehensive, holistic and ''all-inclusive'' picture of the chosen subject. Multidisciplinary in scope, it combines theoretical and empirical work from a range of disciplines, notably public health, molecular and medical sciences, the humanities and social sciences. In so doing, it also takes into account rapid scientific advances from fields such as systems biology, microbiomics, epigenomics or information and communication technologies as well as the hight potential of ''big data'' for public health.
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