On December 14th 2016 it took place in Barcelona the Symposium “PRIVATE HEALTH DATA IN THE CLOUD”, which counted with the attendance of 26 people. This event, jointly organized by the PanCanRisk and the MedBioinformatics projects, targeted mainly research groups and organizations, students, project managers, patients and legal advisors interested in the protection of health data, especially genetic data.
The event went through the new European Directive on data protection, discussing with experts all ethical and legal implications, including the conciliation of data security and the anonymity measures needed to preserve the identity of subjects involved in clinical trials and research projects.
There was consensus on the need of a common ethical and legal framework to facilitate genomic and clinical data, global science collaboration, and responsible research conduct. The attendees suggested designing an international code of conduct to enable global genomic and clinical data sharing for biomedical research within a human rights framework.
The event used both Twitter and Periscope accounts (@pancanrisk) to improve dissemination and to allow viewers to make questions to the speakers (HT #PrivateHealthData).
The sessions were recorded and will be part of a video that will be posted on the web along with the presentations of speakers.