Attitudes of pediatric residents toward ethical issues associated with genetic testing in children

Attitudes of pediatric residents toward ethical issues associated with genetic testing in children
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DOI:
10.1542/peds.110.2.360
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发表时间:
2002-08-01
期刊:
影响因子:
8
通讯作者:
McGovern, MM
McGovern, MM
中科院分区:
医学2区
文献类型:
--
作者:
Rosen, A;Wallenstein, S;McGovern, MM

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Objective.评估儿科住院医师对分子遗传学检测的态度及其在儿科患者中使用的相关伦理问题。一项对在3家纽约大都会区医院参加培训项目的儿科住院医师(n = 160;应答率:40%)进行的问卷调查旨在确定他们对儿童和青少年基因检测的态度。研究工具提供了2个临床小插曲,描述了儿科患者存在遗传性疾病感染风险或携带遗传性疾病的情况。居民匿名返回调查问卷。大多数儿科住院医师认识到教育家庭成员(95%)和高危人群(89%)了解他们有风险的疾病遗传模式的重要性。然而,相当多的人会在父母的要求下对孩子进行亨廷顿病的预测性测试(39%在10岁时,52%在17岁时),超过一半的人会对受影响男性的认知正常的姐妹进行脆性X染色体携带者研究(56%)。必须努力在住院医师培训期间教育所有医生有关基因检测的伦理问题。对于儿科住院医师,这种教育必须包括在这个年龄组提供这种测试的复杂性的指导。
Objective. To assess the attitudes of pediatric residents toward molecular genetic testing and some associated ethical issues that accompany its use in pediatric patients.Methods. A questionnaire study of pediatric residents (n = 160; response rate: 40%) enrolled in training programs at 3 New York metropolitan area hospitals was designed to determine their attitudes toward genetic testing in children and adolescents. The study instrument presented 2 clinical vignettes that described scenarios where a pediatric patient was at risk for being affected with or a carrier of a genetic disorder. Residents returned the questionnaire anonymously.Results. Most pediatric residents recognized the importance of educating family members (95%) and at-risk individuals (89%) about the inheritance pattern of the disorders they were at risk for. However, a substantial number would order predictive testing for Huntington disease in a child at the request of a parent (39% at age 10 and 52% at age 17), and more than half would order fragile X carrier studies on the cognitively normal sister of an affected male (56%).Conclusions. An effort must be made to educate all physicians during their residency training about the ethical issues associated with genetic testing. For pediatric residents, such education must include instruction on the complexities associated with offering such testing in this age group.