Chunk #76 — PART II. CORE QUESTIONS — F. What is the Content of those Responsibilities? Four Issues and Who Should Address Them — Step 1: Clarifying the criteria and roster
A number of biobank characteristics can make return of IFs or IRRs more difficult for the biobank and potentially less beneficial to the contributor. Aggregating a large quantity of data or samples from a large number of contributors means that any policy on return will be more costly and labor-intensive than when undertaken in the context of a smaller-scale primary research study. Efforts are under way to estimate the number of genetic findings that might warrant consideration for return.100 Additionally, because biobanks archive data and samples for long periods of time and multiple research uses, a significant amount of time may elapse between collection of the data or samples and identification of an IF or IRR, potentially making relocating and recontacting the contributor challenging if not impossible and reducing the utility for the contributor (as predicted disease or death, for example, may have already occurred). Biobanks typically take steps to de-identify data and samples before they are released to secondary researchers for analysis (requiring de-identification at the collection site or doing it at the biobank or depending on a third
