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Ethical Dilemmas in Genetic Testing: Examples from the Cuban Program for Predictive Diagnosis of Hereditary Ataxias |
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| Authors: | Tania Cruz Mariño Rubén Reynaldo Armiñán Humberto Jorge Cedeño José Miguel Laffita Mesa Yanetza González Zaldivar Raúl Aguilera Rodríguez Miguel Velázquez Santos Luis Enrique Almaguer Mederos Milena Paneque Herrera Luis Velázquez Pérez |
| Affiliation: | 1.Predictive Genetics Department,Center for Research and Rehabilitation of Hereditary Ataxias (CIRAH),Holguín,Cuba;2.Molecular Genetics Department,Center for Research and Rehabilitation of Hereditary Ataxias (CIRAH),Holguín,Cuba;3.Centre for Predictive and Preventive Genetics (CGPP),IBMC, University of Porto,Porto,Portugal;4.Neurophysiology Department,Center for Research and Rehabilitation of Hereditary Ataxias (CIRAH),Holguín,Cuba;5.Holguín,Cuba |
| Abstract: | 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. |
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