对儿童进行成年期发病疾病的基因检测：家庭利益的限度
Genetic testing of children for diseases that have onset in adulthood: the limits of family interests.
作者信息
Hardart George E, Chung Wendy K
机构信息
Program in Women and Children's Bioethics, and
Department of Pediatrics, Columbia University, New York, New York.
出版信息
Pediatrics. 2014 Oct;134 Suppl 2(Suppl 2):S104-10. doi: 10.1542/peds.2014-1394F.
Two recent policy statements, one from the American Academy of Pediatrics and one from the American College of Medical Genetics, reach very different conclusions about the question of whether children should be tested for adult-onset genetic conditions. The American Academy of Pediatrics policy begins with the presumption that genetic testing for children should be driven by the best interest of the child. It recognizes the importance of preserving the child's open future, recommending that genetic testing for adult-onset diseases be deferred. The American College of Medical Genetics, by contrast, recommended testing children for at least some adult conditions, although it should be noted they have recently modified this recommendation. They justified this recommendation by arguing that it, in fact, was in the best interests of the child and family to receive this information. In this article, we analyze these 2 different positions and suggest ways that the seeming conflicts between them might be reconciled.
美国儿科学会和美国医学遗传学学会近期发布的两份政策声明，对于儿童是否应接受成人发病型遗传病检测这一问题得出了截然不同的结论。美国儿科学会的政策以儿童的最大利益应驱动儿童基因检测这一假设为出发点。它认识到保留儿童开放未来的重要性，建议推迟对成人发病型疾病的基因检测。相比之下，美国医学遗传学学会则建议对儿童进行至少某些成人疾病的检测，不过需要注意的是，他们最近已修改了这一建议。他们为这一建议辩护称，实际上，获取这些信息符合儿童和家庭的最大利益。在本文中，我们分析这两种不同立场，并提出调和它们之间明显冲突的方法。
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