Biobanks and Electronic Health Records: Open Issues

This paper is aimed at providing the description of possible, desirable interactions between biobanks and the genetic data they process on one side, and a regulatory concept that is becoming crucial in the European and Italian privacy law context, namely Electronic Health Records (EHR) on the other. The computerized processing of personal health data via digital platforms has received by the Italian Data Protection Authority a regulatory definition which appears to be quite narrowly constructed around the idea that this kind of data treatment will be authorized only if carried on for the purpose of providing a medical service for the therapeutic or diagnostic benefit of the patient. The interactive treatment of genetic data combining health data providing a follow up of the health conditions of the original donor is crucial in the so called post-genomic era. Bioinformatics itself is characterized by a series of activities taking place at the informational level, like acquisition, storage, distribution, analysis, interpretation, etc. Providing health services based also on individual genetic identities and on the knowledge of genomic risks of patients will enhance the efficacy of health care.