Providing trust and interoperability to federate distributed biobanks

Abstract

Biomedical research requires large numbers of well annotated, quality-assessed samples which often cannot be provided by a single biobank. Connecting biobanks, researchers and service providers raises numerous challenges including trust among partners and towards the infrastructure as well as interoperability problems. Therefore we develop a holistic, open-source and easy-to-use IT infrastructure. Our federated approach allows partners to reflect their organizational structures and protect their data sovereignty. The search service and the contact arrangement processes increase data sovereignty without stigmatizing for rejecting a specific cooperation. The infrastructure supports daily processes with an integrated basic sample manager and user-definable electronic case report forms. Interfaces for existing IT systems avoid re-entering of data. Moreover, resource virtualization is supported to make underutilized resources of some partners accessible to those with insufficient equipment for mutual benefit. The functionality of the resulting infrastructure is outlined in a use-case to demonstrate collaboration within a translational research network. Compared to other existing or upcoming infrastructures, our approach has ultimately the same goals, but relies on gentle incentives rather than top-down imposed progress.