https://doi.org/10.4081/mem.2015.17

Un deber de conocer para ser autónomos? Focalizando la atención en la autonomía personal en el derecho a no saber la información genètica?

V. 64 N. 4 (2015)
Pubblicato: agosto 30, 2015
Asesoría genética, derecho a no saber, pruebas genéticas, autonomía personal, ignorancia genética / Genetic counseling, right not to know, genetic tests, personal autonomy, genetic ignorance
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Autori

Yordanis Enríquez Canto
yenriquez@ucss.edu.pe
Doctor en Bioética, Prof. Auxiliar de Metodología de la Investigaciòn Científica, Departamento de Investigaciòn, Facultad de Ciencias de la Salud, Universidad Catòlica Sedes Sapientiae, Lima, Peru.
En el debate bioètico el desafío a la noción de autonomía personal, respecto al acceso a la información genètica, se evidencia cuando se intenta dar sentido y proteger un interès en no saber. Tal debate se desarrolla en diversas áreas relacionadas con el uso de la información genètica, sin embargo el presente trabajo se focaliza en el contexto de la asesoría genètica. Una de las tesis centrales de este debate propone en primer lugar, que el derecho a no conocer la propia condición genètica no aumenta el valor de la autonomía individual, sino que lo degrada y, segundo, que una ignorancia deseada respecto a los resultados de las pruebas genèticas es culpable. El artículo constituye una respuesta a las tesis de Rosamond Rhodes y Rodolfo Vázquez. En esta propuesta se realiza una argumentación que sigue un doble esquema. El primero incluye un razonamiento contra aquellos que hacen uso de su derecho a no saber, afirmando que no se puede ser autónomo en las decisiones sin saber toda la información pertinente. El segundo tiene en cuenta la decisión de no saber en relación a otros individuos: concluyendo que la ignorancia genètica es irresponsable e incluso culpable. El objetivo del artículo es proponer, en su primera parte, algunas consideraciones críticas respecto a la díada: autonomía - necesidad de información; y en la segunda, realizar un análisis de la estrategia argumentativa que sostiene que la elección de no saber los resultados diagnósticos es una ignorancia incriminatoria.
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In the bioethical debate regarding access to genetic information, the challenge to the notion of personal autonomy is evident when attempting to make sense of and to protect a patient's interest in not knowing. Such a debate takes place in various areas related to the use of genetic information, however the present work focuses on the context of genetic counseling. One of the main theses in this debate suggests first that the right not to know one's genetic condition does not increase the value of individual autonomy, but rather degrades it and, second, that a desired ignorance of the results of genetic testing is guilty. The article is a response to the arguments of Rosamond Rhodes and Rodolfo Vázquez. The thesis proposes an argumentation that follows a double outline. The first includes an argument against those who exercise their right not to know, stating that one cannot make autonomous decisions without knowing all the relevant information. The second takes into account the decision of not knowing related to other individuals, concluding that a person who chooses genetic ignorance is irresponsible and even guilty. The purpose of the paper is to first suggest some critical considerations regarding the dyad need of information-autonomy, while secondly proposing an analysis of the theoretical framework that argues that the choice of not knowing the diagnostic results is an incriminating ignorance.

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Canto, Y. E. (2015). Un deber de conocer para ser autónomos? Focalizando la atención en la autonomía personal en el derecho a no saber la información genètica?. Medicina E Morale, 64(4). https://doi.org/10.4081/mem.2015.17

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