Chunk #34 — PART II. CORE QUESTIONS — C. What Design Options Are Open to Biobanks to Handle IFs & IRRs? Designing to Allow or to Avoid Re-identification
A decision to design a biobank by irretrievably stripping identifiers and retaining no link to identifiers, consequently precluding return, may be based on a number of factors. For example, Pulley et al.38(p47) argue that BioVU’s design increases contributor privacy, thus “minimiz[ing] the risk of harm to individuals while maximizing the benefit to the broader society”38(p45) However, many (if not most) biobanks will be designed differently, for a range of research reasons. For example, the primary researchers or the biobank itself may follow contributors prospectively and indeed may seek to collect samples or data from contributors at multiple points in time. When biobanks receive samples and/or data from individual research sites that themselves maintain identifiers, then re-identification and return of IFs and IRRs can be accomplished. Moreover, there are biobanks that maintain the capacity themselves to re-identify contributors. Whenever contributors are re-identifiable within the biobank research system, the design is one in which IFs and IRRs can be returned. This leads to the challenging question of what further choices these biobanks should make on the question of whether to return IFs or IRRs and, if so, which ones and how.
