Biobanking and Disclosure of Research Results: Addressing the Tension Between Professional Boundaries and Moral Intuition

Abstract

The role of biobanks is changing to accommodate the expanding needs of the research enterprise. In addition to collecting human specimens, many biobanks also collect research results derived from those specimens.With the advent of technologies to screen the whole genome and the inter-relatedness of multiple genes with multiple diseases, research results will increasingly reveal information with health implications for the contributor of the specimen. What is the responsibility of the biobank to communicate these research findings? What are the benchmarks to guide decision-making on a daily basis? Although there is an emerging ethical imperative from international guidelines to communicate research results to the individual, how should these be implemented in practice? The answers to these questions are highly contextual and currently lack standards of reference. This creates tensions between the traditional boundaries of a biobank, as a resource to store specimens, and the moral intuition of the biobank personnel, as gatekeepers to potentially beneficial health information. This chapter explores these tensions and issues of disclosure of research results in the context of biobanking and provides practice recommendations and next steps for policy development.