Progetto europeo GCOF

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GCOFLe tecnologie innovative impiegate per il sequenziamento del DNA si sono sviluppate in modo molto rapido negli ultimi cinque anni. Oggi i costi e i tempi necessari per leggere il DNA delle persone si sono radicalmente ridotti. Le nuove tecnologie del genoma stanno così per essere progressivamente integrate nella pratica clinica, per la diagnosi e la cura dei disturbi genetici. GCOF – clinica genetica del futuro – è un progetto europeo che intende esplorare le implicazioni sociali del sequenziamento del DNA.

Nell’ambito di GCOF un team multidisciplinare di esperti, che mette insieme genetisti, bioinformatici e scienziati sociali sta collaborando per definire le caratteristiche di una prefigurata clinica genetica del futuro, in cui le tecnologie del genoma incontreranno i pazienti.

GCOF intende definire il ruolo dei differenti attori sociali coinvolti, gli eventuali aspetti controversi che riguardano l’accettazione sociale delle nuove tecnologie del genoma, come il sequenziamento di nuova generazione (NGS), in modo da garantire la sostenibilità sociale e l’innovazione responsabile. Le attività del consorzio GCOF riguardano assi tematici quali la gestione dei dati e delle informazioni genetiche, la definizione delle buone pratiche per il consenso informato, l’uso innovativo dei dati genetici nelle pratiche di cura, il coinvolgimento della società e la governance.

Observa è parte del consorzio GCOF e contribuisce al progetto attraverso una riflessione sul coinvolgimento del pubblico. Sono così realizzati gruppi di discussione con insegnati e studenti, comunicatori della scienza, medici di base, anziani e associazioni di pazienti.
Inoltre, una delegazione italiana di ‘ambasciatori sociali’ incontrerà gli esperti del consorzio GCOF, per condividere importanti elementi della clinica genetica del futuro, quali l’utilizzo e le forme di controllo sui dati genetici, le aspettative e i bisogni degli esperti e dei pazienti, le effettive potenzialità riconosciute al sequenziamento del DNA.

Maggiori informazioni sono disponibili sul portale web del progetto.

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