Hegwer G, Fairley C, Charrow J, Ormond K E
Center for Genetic Medicine and Graduate Program in Genetic Counseling, Feinberg School of Medicine, Northwestern University, Chicago, Illinois 60611, USA.
J Genet Couns. 2006 Feb;15(1):61-70. doi: 10.1007/s10897-005-9004-5.
Carrier testing is offered on the basis of Ashkenazi Jewish background in both the prenatal and preconception settings, with the goal of decreasing the prevalence of affected individuals and allowing informed decision-making during childbearing. The purpose of this study was to (1) document the demographic characteristics of individuals who attended a free education and screening program, (2) learn how the education program changed attendees' knowledge and attitudes by learning more about these disorders, and (3) determine how participants perceived their carrier status risk. One hundred seventy-four individuals completed questionnaires at the beginning and end of an educational program about the Ashkenazi Jewish genetic disorders. There was a statistically significant difference in the participant's level of knowledge from the pre- to post education (p < .001). Females reported a significantly higher level of concern about the disorders (p = .004) and their carrier status (p = .006) before the education, as well as about their carrier status post education (p = .05). Finally, having one or more parent affiliated with Orthodox Judaism was related to higher knowledge before the education program (p = .05). In conclusion, this study demonstrated that an educational carrier screening program increased knowledge about the disorders and also produced mild anxiety regarding personal and reproductive risks.
基于阿什肯纳兹犹太背景,在产前和孕前阶段都提供携带者检测,目的是降低患病个体的比例,并在生育期间让人们能够做出明智的决策。本研究的目的是:(1)记录参加免费教育和筛查项目的个体的人口统计学特征;(2)通过让参与者更多地了解这些疾病,了解教育项目如何改变他们的知识和态度;(3)确定参与者如何看待自己的携带者状态风险。174名个体在一个关于阿什肯纳兹犹太遗传性疾病的教育项目开始和结束时填写了问卷。教育前后参与者的知识水平存在统计学上的显著差异(p < .001)。女性在教育前对这些疾病(p = .004)及其携带者状态(p = .006)的担忧程度显著更高,在教育后对其携带者状态的担忧程度也更高(p = .05)。最后,在教育项目之前,有一位或多位父母隶属于东正教犹太教与更高的知识水平相关(p = .05)。总之,本研究表明,一个教育性的携带者筛查项目增加了对这些疾病的了解,同时也引发了对个人和生殖风险的轻度焦虑。