Descrizione del progetto
Un nuovo approccio di natura etica alla condivisione dei dati sanitari
Nell’odierna era digitale, la transizione dell’UE verso un miglioramento nell’utilizzo dei dati sanitari ha dato origine a una preoccupazione critica. L’imminente corpus legislativo sulla strategia digitale ha accentuato i timori secondo cui le istituzioni pubbliche sfrutterebbero i numerosi dati sanitari dei cittadini mettendone a repentaglio il benessere, in particolare nell’ambito dei sistemi sanitari basati sulle assicurazioni. Con il sostegno del programma di azioni Marie Skłodowska-Curie, il progetto DataCom stabilirà un quadro etico per l’utilizzo secondario dei dati sanitari in possesso degli enti pubblici. Concentrandosi su Italia, Spagna e Paesi Bassi, DataCom si configurerà come pioniere del concetto di mercificazione etica, un approccio che punta a sfruttare i dati personali per il bene comune, pur rispettando le aspettative individuali e affrontando i rischi associati.
Obiettivo
The EU has recently enhanced the potential of health data in the EU digital market by promoting a number of initiatives and new regulations to facilitate data sharing and re-use among public institutions: the forthcoming provisions of the Digital Strategy Corpus of law. These, in combination with pre-existing rules and practices of health data exploitation, might sharpen the risks for citizens, for example allowing public bodies to exploit big data sets - to make detrimental decisions regarding the access of certain patients to health care (e.g. in the case of insurance-based systems). In this context, academic analysis is urgently needed, as well as suggesting a revision of the new regulations to EU policy-makers to facilitate responsible data sharing. DataCom aims at building a new framework to facilitate an ethical secondary use of health data held by public bodies, with the aim of improving accountability and enhancing responsible re-use. To build it, I will develop and test in intersectoral practical environments the innovative concept of “Ethical Commodification”: the possibility of exploiting personal data in an ethical way for the public good, in accordance with the data subject’s expectations and needs and taking into account the risks associated with the exploitation of anonymized data sets, focusing on 3 Member States, Italy, Spain, and the Netherlands. In order to reach this objective, DataCom has a strong interdisciplinary and intersectoral approach, bridging law, ethics, and computer science, taking into consideration the needs of the public sector and those of citizens. To ensure the successful implementation of these project goals I will conduct my research at the University of Turin's Law Department, with the guidance of Prof. Ugo Pagallo, a leading scholar. This project will prepare me to become a tenured scholar and obtain advanced funding, strengthening my academic profile and allowing me to establish my own research group.
Campo scientifico
Parole chiave
Programma(i)
- HORIZON.1.2 - Marie Skłodowska-Curie Actions (MSCA) Main Programme
Meccanismo di finanziamento
HORIZON-TMA-MSCA-PF-EF - HORIZON TMA MSCA Postdoctoral Fellowships - European FellowshipsCoordinatore
10124 Torino
Italia