Chunk #32 — 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 range of design options are open to biobanks. The design question of whether to preserve the possibility of re-identification or make it impossible has direct implications for the ability to re-identify individual contributors and return IFs and IRRs. Thus, biobanks have to make a fundamental decision: (1) to design the biobank so that re-identification of contributors can be accomplished (at the primary research or collection site, at the biobank itself, or by a trusted intermediary, as discussed further below), thus enabling return of IFs or IRRs, or (2) to design the biobank so that re-identification is impossible because no one maintains the links to individual identities and thus IFs and IRRs cannot be returned. Only if re-identification is possible do biobanks face the further question of what return, if any, will be offered. A biobank that irretrievably strips identifiers and prohibits researchers from attempting to re-identify contributors (such as BioVU) cannot return IFs and IRRs.38,39 As Pulley et al. note38 (pp42, 48) BioVU is “one of few biobanks” set up to conduct “nonhuman subjects research” and “the design explicitly
