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首页> 外文期刊>Genetic testing and molecular biomarkers >Perceptions of Population Cystic Fibrosis Prenatal and Preconception Carrier Screening Among Individuals with Cystic Fibrosis and Their Family Members
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Perceptions of Population Cystic Fibrosis Prenatal and Preconception Carrier Screening Among Individuals with Cystic Fibrosis and Their Family Members

机译：人口囊性纤维化产前的观念和偏见载体筛查囊性纤维化患者和他们的家庭成员

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摘要

Our study aimed to quantitatively explore the perceptions of individuals with cystic fibrosis (CF) and their family members toward population prenatal and preconception CF carrier screening, including perceived benefits, concerns, and the acceptability of offering screening. Method: In November 2009, 258 members of the Cystic Fibrosis Association of Western Australia were invited via an e-mail newsletter to participate in a survey, with a link to an online survey tool. A further 246 members without e-mail access were mailed a paper copy of the survey. Results: Overall, we found the majority of individuals with CF (n27) and their families (n122) had positive views of population CF carrier screening. However, the small number of individuals with CF represented in the study limits the interpretation of these data. Conclusion: From a public policy perspective, our findings overall suggest that in principle the views of family members are not a barrier to the introduction of population CF carrier screening. The views of individuals with CF warrant further investigation. Data such as ours should be used with other sources of information, such as economic evaluations and the perceptions of the general public, geneticists, and other medical practitioners to inform decisions regarding screening within the public health system.
机译：我们的研究旨在定量探索囊性纤维化患者的观念人口(CF)和他们的家人产前和偏见CF载体筛查,包括感知利益、担忧,提供检测的可接受性。2009年11月,258个成员的囊性纤维化澳大利亚西部被邀请协会通过电子邮件通讯参与调查,链接到一个在线调查工具。246个成员没有被寄电子邮件访问论文调查的副本。发现大多数患者CF (n27)和他们的家人(n122)有积极的看法人口CF载体筛查。少数患者CF代表在这项研究中限制的解释数据。整体的角度来看,我们的研究结果表明家庭成员的意见不是一个原则障碍的引入人口CF载体筛选。CF值得进一步调查。我们应该与其他来源的使用和信息,比如经济评估对公众的看法,遗传学家,和其他医护人员的通知在公众决定筛查卫生系统

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