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Willingness to participate in genome testing: a survey of public attitudes from Qatar.
Journal of Human Genetics ( IF 3.5 ) Pub Date : 2020-07-28 , DOI: 10.1038/s10038-020-0806-y
Hanan F Abdul Rahim 1 , Said I Ismail 2 , Amel Hassan 3 , Tasnim Fadl 2 , Salma M Khaled 4 , Bethany Shockley 4 , Catherine Nasrallah 4 , Yara Qutteina 4 , Engi Elmaghraby 4 , Heba Yasin 2 , Dima Darwish 2 , Khalid A Fakhro 5, 6, 7 , Radja Badji 2 , Wadha Al-Muftah 2, 6 , Nahla Afifi 8 , Asmaa Althani 1, 2, 8
Affiliation  

Genomics has the potential to revolutionize medical approaches to disease prevention, diagnosis, and treatment, but it does not come without challenges. The success of a national population-based genome program, like the Qatar Genome Program (QGP), depends on the willingness of citizens to donate samples and take up genomic testing services. This study explores public attitudes of the Qatari population toward genetic testing and toward participating in the QGP. A representative sample of 837 adult Qataris was surveyed in May 2016. Approximately 71% of respondents surveyed reported that they were willing to participate in the activities of the QGP. Willingness to participate was significantly associated with basic literacy in genetics, a family history of genetic diseases, and previous experience with genetic testing through premarital screening. Respondents cited the desire to know more about their health status as the principle motivation for participating, while lack of time and information were reported as the most important barriers. With QGP plans to ramp up the scale of its national operation toward more integration into clinical care settings, it is critical to understand public attitudes and their determinants. The results demonstrate public support but also identify the need for more education and individual counseling that not only provide information on the process, challenges, and benefits of genomic testing, but that also address concerns about information security.



中文翻译:

参与基因组测试的意愿:卡塔尔公众态度的调查。

基因组学具有革新疾病预防,诊断和治疗的医学方法的潜力,但这并非没有挑战。像卡塔尔基因组计划(QGP)这样的基于人口的全国性基因组计划的成功取决于公民捐赠样品和接受基因组测试服务的意愿。这项研究探讨了卡塔尔民众对基因检测和参与QGP的公众态度。2016年5月,对代表性的837名成人卡塔尔人进行了抽样调查。大约71%的受访者表示他们愿意参加QGP的活动。参与的意愿与遗传学的基本知识,遗传疾病的家族史以及以前通过婚前筛查进行基因检测的经验密切相关。受访者表示,希望更多地了解自己的健康状况是参与的主要动机,而据报道,缺乏时间和信息是最重要的障碍。随着QGP计划扩大其国家行动的规模,使其更多地融入临床护理环境,了解公众的态度及其决定因素至关重要。结果表明了公众的支持,但同时也确定了需要进行更多教育和个人咨询的需要,这些教育和咨询不仅可以提供有关基因组测试的过程,挑战和益处的信息,还可以解决对信息安全性的担忧。随着QGP计划扩大其国家运营规模,使其更多地融入临床护理环境,了解公众的态度及其决定因素至关重要。结果表明了公众的支持,但同时也确定了需要更多的教育和个人咨询的需求,这些教育和咨询不仅可以提供有关基因组测试的过程,挑战和益处的信息,还可以解决对信息安全性的担忧。随着QGP计划扩大其国家运营规模,使其更多地融入临床护理环境,了解公众的态度及其决定因素至关重要。结果表明了公众的支持,但同时也确定了需要进行更多教育和个人咨询的需要,这些教育和咨询不仅可以提供有关基因组测试的过程,挑战和益处的信息,还可以解决对信息安全性的担忧。

更新日期:2020-07-28
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