Mutaciones a la ética del asesoramiento genético. Tensiones entre prevención ...

Mutaciones a la ética del asesoramiento genético. Tensiones entre prevención ...

Instituto de Ciencias

Mutaciones a la ética del asesoramiento genético. Tensiones entre prevención y autonomía analizadas a partir de un estudio etnográfico sobre el test genético predictivo para cáncer colorrectal hereditario no polipósico

Modern diagnostic technologies have foster preventive medicine, while has redefined the idea of “patient” to include those who are “at risk” of disease. In the case of predictive genetic tests, these “prophetic” revelations could institute new moral and social categories and new forms of suffering in people who are not yet sick. This thesis explores, through an ethnographic study developed between 2013 and 2016 in genetic counseling services of the City of Buenos Aires, in the process of predictive genetic testing for hereditary colorectal cancer, to understand the experiences with the test and with the diagnosis of a mutation, and also the categories built in this process. It can be seen that counselling is based on a model of transparent information and delocalised decisions, which put mutation carriers in a liminal position between health and disease. At the same time the process, replicating global initiatives, constructs knowledge of the genetic profile as a duty toward the family. Alternative counseling models are discussed that open up to the creatively production of new agencies.

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