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Chunk #56 — PART II. CORE QUESTIONS — E. Should the Biobank Itself Have Responsibilities for Managing Return?

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Managing incidental findings and research results in genomic research involving biobanks and archived data sets.
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At a July 2010 workshop convened by NCI, participants identified problems with the conventional view that primary responsibility to deal with IFs and IRRs should rest on the primary research or collection site. Because of these problems, some participants suggested that the biobank itself should have significant responsibility for addressing IFs and IRRs discovered at the biobank and in secondary research, rather than acting as a “passive entity.”24(p34–35) Biobanks may also be able to marshal additional resources to cope with IFs and IRRs. Involving the biobank, rather than relying exclusively on individual collection and primary research sites, may additionally offer more consistency in how IFs and IRRs are handled for contributors whose data and samples are housed in a given biobank, no matter where they were collected.