Chunk #95 — PART II. CORE QUESTIONS — F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them — Step 3: Re-identifying the contributor(s)
Return of IFs and IRRs will generally require re-identification of the contributor individual(s). Biobanks vary in the amount of identifying information, if any, that reaches the biobank itself. Different biobanks within the eMERGE Network, for example, approach this differently. Vanderbilt’s BioVU robustly de-identifies samples using a process of generating a unique identifier that guards against ready re-identification.9 On the other hand, Northwestern’s NUgene retains the capacity to re-identify participants.112 Mayo’s biobank is making this a focal topic of community engagement: “Since genomic data cannot easily or with certainty be fully de-identified or anonymized, an important aim of the Mayo eMERGE project is to engage extensively with research participants and the community regarding best practices….”9(p5)
