La génétique pour tous ?

LONDRES – « Les informations génétiques qui vous concernent doivent être contrôlée par vous-même » annonce une publicité de l’entreprise 23andMe, qui propose directement au public des services personnalisés de diagnostic génétique. A la lumière des vives réactions qui ont suivi la révélation de la surveillance électronique exercée par les services de renseignement américains, l’idée que les individus doivent être en mesure de décider qui peut accéder ou non à leurs données personnelles ne manque pas d’attrait. Mais savoir si 23andMe met en pratique ce qu’elle prêche est sujet à caution, à tout le moins.

En fait, mêmes certains techno-libertaires, qui pensent que le gouvernement n’a pas à réglementer les nouvelles découvertes en biotechnologie, ont soutenu la décision de la Food and Drug Administration (FDA) américaine – explicitée dans un courrier cinglant adressé à Anne Wojcicki, PDG de 23andMe, en novembre dernier – d’interdire à la société de commercialiser ses tests jusqu’à la complétion de nouvelles analyses scientifiques. « Je voudrais pouvoir dire que la FDA entrave gratuitement l’esprit d’entreprise et l’innovation en sévissant contre 23andMe », écrit Matthew Herper dans le magazine Forbes. « Je souhaiterais que ce soit l’histoire que je suis sur le point d’écrire, mais ce n’est pas le cas ».

Selon la FDA, la commercialisation par 23andMe de tests génétiques individuels non autorisés contrevient à la loi fédérale, parce qu’après un délai de six ans, la société n’a toujours pas prouvé que ses tests donnaient un résultat fiable.

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