Chunk #49 — PART II. CORE QUESTIONS — D. If Data and Samples Can Be Re-identified, Are There Any Biobank Research System Responsibilities to Offer Return of IFs and IRRs? — The ethics of return in biobank research systems
Arguing that secondary research should simply lie beyond the reach of biobank responsibilities to handle IFs and IRRs ignores the fact that biobanks exist in large part to enable that secondary research. Much of what biobanks do is structure access and use of the data and samples. Indeed, if a number of biobanks are already using MTAs and DAAs or DUAs to require secondary researchers to return genomic results generated to the biobank, it is not a far stretch to ask that secondary researchers flag those results that are on a roster of potentially returnable IFs and IRRs. Ethical analysis of biobank-based research typically sees the biobank itself as the primary entity bearing duties of responsible custodianship.71,72,82 It thus makes sense that the biobank should set the rules for the overall process of recognizing (and subsequently analyzing and returning) IFs and IRRs, a process in which secondary researchers are asked to play a part.
