The Leuven Institute for human Genomics and Society (LIGAS) is organising an interuniversity course titled ‘Clinical and Research Genomic Data Sharing and Access’ on August 31st and September 1st.
In order to make the promises of genomic medicine a reality, various national and international organisations have endorsed responsible genomic data sharing in both clinical and research settings. Sharing individual-level genomic data, however, could generate various concerns. Individual-level genomic data contain sensitive personal information which are worthy of robust privacy protection. Additionally, further processing of data, originally accumulated for a single project, gives a new twist to the discussion on the adequacy of informed consent mechanisms.
In order to ensure responsible data sharing, it is crucial to discuss the challenges and promises associated with genomic data sharing with clinicians and researchers from the field.
This course aims to discuss the current state of the art in clinical and research genomic data sharing and address the associated ethical, legal and social challenges.