There is considerable uncertainty, at both national and European level, regarding the application of data protection laws and principles to scientific research carried out in the context of databanks, which latter term is broadly used herein to include biobanks as well as other repositories of health and/or biometric data, such as MRI scans. The University of Malta (UM) is required to establish good practices for the carrying out of such research, which must (i) be based on a sound legal framework and (ii) foster compliance with all applicable legislation.
This need is all the more pressing now that UM has invested in an MRI scanner with the intention of utilising data collected therefrom to advance scientific research in the field. The said research necessitates processing of health/biometric data that is subject to the relevant data protection laws. As yet, however, a sound legal basis under such applicable laws for sharing, storing and using the said data remains elusive.
PaDME is a pilot project that will provide an innovative toolkit proffering a solution towards legal certainty at both a national and European level. To this end, it will consider experiences and best practices adopted in similar scenarios abroad, and shed light upon the significant conceptual uncertainties relating to the General Data Protection Regulation (GDPR) in the context of processing of health/biometric data for scientific research purposes.
