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

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Journal of Genetic Counseling

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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Authors and Affiliations

  1. Predictive Genetics Department, Center for Research and Rehabilitation of Hereditary Ataxias (CIRAH), Holguín, Cuba

    Tania Cruz Mariño, Rubén Reynaldo Armiñán, Humberto Jorge Cedeño, Raúl Aguilera Rodríguez & Miguel Velázquez Santos

  2. Molecular Genetics Department, Center for Research and Rehabilitation of Hereditary Ataxias (CIRAH), Holguín, Cuba

    José Miguel Laffita Mesa, Yanetza González Zaldivar & Luis Enrique Almaguer Mederos

  3. Centre for Predictive and Preventive Genetics (CGPP), IBMC, University of Porto, Porto, Portugal

    Milena Paneque Herrera

  4. Neurophysiology Department, Center for Research and Rehabilitation of Hereditary Ataxias (CIRAH), Holguín, Cuba

    Luis Velázquez Pérez

  5. Avenida Cajigal No 525 F2 Entre Luz y Progreso. Reparto Luz, Holguín, Cuba, CP 80 100

    Tania Cruz Mariño & Luis Velázquez Pérez

Authors
  1. Tania Cruz Mariño
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  2. Rubén Reynaldo Armiñán
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  3. Humberto Jorge Cedeño
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  4. José Miguel Laffita Mesa
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  5. Yanetza González Zaldivar
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  6. Raúl Aguilera Rodríguez
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  7. Miguel Velázquez Santos
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  8. Luis Enrique Almaguer Mederos
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  9. Milena Paneque Herrera
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  10. Luis Velázquez Pérez
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Corresponding authors

Correspondence to Tania Cruz Mariño or Luis Velázquez Pérez.

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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

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