Chapter 8 : actors and Tools of predictive genetics: ethics at The heart of governance

Abstract

Genetic prediction is at the cross road of the various meanings of the concept ofpersonalized medicine or medicine 4P: Personalized, Preventive, predictive andparticipative, also called precision medicine or prevision medicine. this entireframe questions i) the place of data in medicine and its consequences on therelation between patients and doctors; ii) the empowerment of people in themanagement of their own health; iii) the access to health related data outside thehealth system (tests directly provided to the consumer over the counter). thesevarious dimensions are analyzed through the phenomenon of massive data andlarge-scale genetic tests, in particular dNA sequencing in the clinical frame, theblurred limits between categories previously clearly distinct (e.g. research versusclinical care), the recommendations of professional societies of human genetics.the analysis conducted shows that the technological development and the toolsof personalized medicine cannot occur in a responsible way without aconcomitant analysis of the underlying values at stake