iTISSeu project is a database platform and a traceability system as a means in Genetic Data Protection of Research Biobanks. IT is a critical tool for data storage, acquisition and analysis; however the approach in different biobanks varies. Pseudoanonimization could be proposed as a means for exchanging a range of personal identifiers for an indirect identifier, which is usually a code key. However even a code key is not sufficient to dissociate the data and the sample, consequently the donor, due to the fact that other indirect information, such as place, collection time and DNA, could make the sample identical. Thus a coding system is required and different levels of security related to code keys should be in place.
In the proposed system three parameters were taken into account in order to define the different access levels to the genetic data base: (a) the donor’s consent type, (b) the importance of the sample related to its properties (e.g. the existence of a rare disease) and (c) the role of the user in the research process.
The project is a common effort of the European Institute for Evolution and Integration, Greece, the National and Kapodistrian University University of Athens, School of Law, Economics and Political Sciences, Faculty of Law, Athens, Greece and Foodstandard SA, Greece. A paper will be presented in the 6th International Conference on Information Law and Ethics (ICIL 2014).
For further information please check https://itisseu.weebly.com/
