Children's Mercy Bioethics Center, Children's Mercy Kansas City, Kansas City, MO, USA.
Department of Pediatrics, University of Missouri-Kansas City, Kansas City, MO, USA.
Genet Med. 2019 Oct;21(10):2190-2198. doi: 10.1038/s41436-019-0483-4. Epub 2019 Mar 21.
Professional consensus has traditionally discouraged predictive genetic testing when no childhood interventions can reduce future morbidity or mortality. However, advances in genome sequencing and accumulating evidence that children and families cope adequately with predictive genetic information have weakened this consensus. The primary argument remaining against testing appeals to children's "right to an open future." It claims that the autonomy of the future adult is violated when others make an irreversible choice to obtain or disclose predictive genetic information during childhood. We evaluate this argument and conclude that children's interest in an open future should not be understood as a right. Rather an open future is one significant interest to weigh against other important interests when evaluating decisions. Thus, predictive genetic testing is ethically permissible in principle, as long as the interests promoted outweigh potential harms. We conclude by offering an expanded model of children's interests that might be considered in such circumstances, and present two case analyses to illustrate how this framework better guides decisions about predictive genetic testing in pediatrics.
专业共识传统上不鼓励进行预测性基因检测，除非儿童干预措施可以降低未来的发病率或死亡率。然而，基因组测序的进步和越来越多的证据表明，儿童和家庭能够很好地应对预测性遗传信息，这削弱了这一共识。反对检测的主要论点仍然诉诸于儿童的“未来开放权”。它声称，当其他人在儿童时期做出获取或披露预测性遗传信息的不可逆转选择时，未来成年人的自主权就受到了侵犯。我们评估了这一论点，并得出结论，儿童对未来开放的兴趣不应被理解为一种权利。相反，在评估决策时，未来的开放性是一个需要权衡的重要利益，而不是唯一的利益。因此，预测性基因检测原则上在伦理上是可以接受的，只要所促进的利益超过潜在的危害。最后，我们提供了一个扩展的儿童利益模型，在这种情况下可以考虑这些利益，并提出两个案例分析来说明如何通过这一框架更好地指导儿科预测性基因检测的决策。
