Attitudes of genetic counselors towards genetic susceptibility testing in children.
Attitudes of genetic counselors towards genetic susceptibility testing in children.
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遗传咨询师对儿童遗传易感性检测的态度。
DOI：
10.1007/s10897-010-9298-9
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发表时间：
2010
影响因子：
1.9
通讯作者：
Metzenberg,AidaB
中科院分区：
文献类型：
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作者：
Mackoff,RishonaL;Iverson,EllenF;Kiekel,Preston;Dorey,Frederick;Upperman,JeffreyS;Metzenberg,AidaB
基因易感性研究和测试正在引领一个个性化医学时代。遗传咨询师充当医学遗传学社区和公众之间的联络人。了解遗传咨询师的意见对于制定检测指南将是很重要的。对216名NSGC成员进行了儿童遗传易感性检测的态度评估。遗传咨询师可能会支持测试，如果结果将确定：疾病进展或预后，特定治疗后存活的可能性，或药物不良反应的风险。遗传咨询师不太可能支持测试，以确定对以后疾病发展的易感性，或者在缺乏可用的干预措施的情况下。如果自己的孩子处于危险之中，他们对自己的孩子进行测试的意愿与他们对任何危险儿童进行基因测试的支持之间存在强烈的正相关关系。受访者强烈支持父母/监护人和儿童的权利，而不是医生或保险的权利。他们指出，在适当的情况下，应该在测试之前获得同意，并且结果的副本应该保存在永久的医疗记录中。受访者对保险歧视、在没有医疗需要的情况下进行测试以及剥夺儿童的自主性表示关切。
Genetic susceptibility research and testing is leading to an era of personalized medicine. Genetic counselors act as liaisons between the medical genetics community and the public. Understanding the opinions of genetic counselors will be important in developing testing guidelines. Attitudes towards genetic susceptibility testing in children were assessed for 216 NSGC members. Genetic counselors were likely to support testing if the results would determine: disease progression or prognosis, likelihood of survival after a specific treatment, or risk for an adverse drug reaction. Genetic counselors were unlikely to support testing to determine susceptibility to later disease development or in the absence of available intervention. There was a strong positive correlation between attitudes associated with desire to test their own child, if at risk and their support for genetic testing in any child at risk. Respondents strongly favored parent/guardian and child’s rights over doctor or insurance rights. They indicated assent should be obtained prior to testing, when appropriate, and that a copy of results should be kept in a permanent medical record. Respondents expressed concerns about insurance discrimination, testing in the absence of medical necessity, and taking away a child’s autonomy.