Mariño Tania Cruz, Armiñán Rubén Reynaldo, Cedeño Humberto Jorge, Mesa José Miguel Laffita, Zaldivar Yanetza González, Rodríguez Raúl Aguilera, Santos Miguel Velázquez, Mederos Luis Enrique Almaguer, Herrera Milena Paneque, Pérez Luis Velázquez
Predictive Genetics Department, Center for Research and Rehabilitation of Hereditary Ataxias (CIRAH), Holguín, Cuba.
J Genet Couns. 2011 Jun;20(3):241-8. doi: 10.1007/s10897-010-9347-4. Epub 2011 Jan 25.
Predictive testing protocols are intended to help patients affected with hereditary conditions understand their condition and make informed reproductive choices. However, predictive protocols may expose clinicians and patients to ethical dilemmas that interfere with genetic counseling and the decision making process. This paper describes ethical dilemmas in a series of five cases involving predictive testing for hereditary ataxias in Cuba. The examples herein present evidence of the deeply controversial situations faced by both individuals at risk and professionals in charge of these predictive studies, suggesting a need for expanded guidelines to address such complexities.
预测性检测方案旨在帮助患有遗传性疾病的患者了解自身病情，并做出明智的生殖选择。然而，预测性方案可能会使临床医生和患者面临伦理困境，从而干扰遗传咨询和决策过程。本文描述了古巴一系列五例涉及遗传性共济失调预测性检测的伦理困境。本文中的例子展示了高危个体和负责这些预测性研究的专业人员所面临的极具争议的情况，这表明需要扩展指导方针来应对此类复杂问题。
