ELSI challenges with children in Translational Medicine

Abstract

Paediatric translational research deals mainly with genomics of biological samples. It has benefitted substantially from developments in new technologies and from international collaboration to access and use large cohorts of banked biological samples and associated data. However, there are still significant ELSI (ethical, legal and societal implications) challenges that need to be addressed before we can move smoothly from the “bench” to the “bedside” to the “community”. In this chapter we shall concentrate on the intertwined ethical and legal issues regarding informed assent/consent of minors and the return of genomic results to minors and families. This leads to the societal issues faced in minor engagement and empowerment. We will then emphasise the need for healthcare integrated biobanking to maximise use of samples and data and so facilitate translational research.