Ethical Dilemmas in Genetic Testing: Examples from the Cuban Program for Predictive Diagnosis of Hereditary Ataxias

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 decisi...

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Bibliographic Details
Published in:Journal of genetic counseling 2011-06, Vol.20 (3), p.241-248
Main Authors: 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
Format: Article
Language:English
Subjects:
Adolescent
Adult
At risk
Ataxia
Ataxins
Biomedical and Life Sciences
Biomedicine
Case Presentation
Clinical Psychology
Cuba
Diagnostic testing
Ethical dilemmas
Ethics
Ethics, Medical
Female
Genetic Carrier Screening
Genetic screening
Genetic testing
Genetic Testing - ethics
Gynecology
Hereditary ataxias
Human Genetics
Humans
Nerve Tissue Proteins - genetics
Pedigree
Predictive testing program
Predictive Value of Tests
Prenatal Diagnosis
Public Health
Spinocerebellar ataxia type 2
Spinocerebellar Degenerations - diagnosis
Spinocerebellar Degenerations - genetics
Twins, Monozygotic
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Summary: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.
ISSN:1059-7700
1573-3599
DOI:10.1007/s10897-010-9347-4