A DUTY TO KNOW TO BE AUTONOMOUS? FOCUSING PERSONAL AUTONOMY ON THE RIGHT NOT TO KNOW GENETIC INFORMATION
A DUTY TO KNOW TO BE AUTONOMOUS? FOCUSING PERSONAL AUTONOMY ON THE RIGHT NOT TO KNOW GENETIC INFORMATION

Summary/Abstract: A Duty to Know to Be Autonomous? Focusing Personal Autonomy on the Right not to Know Genetic Information. 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 many 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 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 a guilty one. 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 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 or even guilty. The purpose of the paper is firstly suggesting 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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