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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Acknowledgements
The authors are deeply indebted to patients affected by SCA2 and Friedreich ataxia that participated in the current research, and to the Cuban Health Care Ministry. We are thankful to José Luis Guisao Martínez for his language corrections and to Dr. Patrick MacLeod for his critical review of the article.
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All contributing authors have consented to publication of the material, they have full control of all primary data and they agree to allow the journal to review the data if requested. Authors have not a financial relationship with the organization that sponsored the research. Authors also declare no conflicts of interest.
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Mariño, T.C., Armiñán, R.R., Cedeño, H.J. et al. Ethical Dilemmas in Genetic Testing: Examples from the Cuban Program for Predictive Diagnosis of Hereditary Ataxias. J Genet Counsel 20, 241–248 (2011). https://doi.org/10.1007/s10897-010-9347-4
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DOI: https://doi.org/10.1007/s10897-010-9347-4