Return of Results: Towards a Lexicon?

Abstract

Currently, the return of results in the domain of biobanking constitutes an ethical and legal quagmire, whether it involves population or specific clinical research studies. In light of the fact that population biobanks are often not seen as distinct from those biobanks created for disease research, as well as the uncertainty as to what "return of results" means concretely, this lexicon attempts to demystify the terminology. The terms - results, return, clinical significance, and utility - are discussed. Through an analysis of international and national normative guidance on this issue, the authors propose a concordance of meaning and a simplified lexicon.