Supporting the Donation of Health Records to Biobanks for Medical Research

Abstract

Biobanks are infrastructures for medical research providing biological material together with data describing these materials and their donors. Annotating biological samples with health related data of the donors is cumbersome, in particular when these data are produced by several independent data sources. We argue that the value of the samples stored in a biobank increases with a more wholesome availability of medical data of the donors and thus we argue for a system encouraging individuals to complement the donation of biological material with the donation of data. We explore the requirements for a system managing the donation of data as a first step for the design of a donation management system for biobanks.