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Chunk #114 — PART III. CRYSTALLIZING 10 RECOMMENDATIONS — Recommendation 6

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Managing incidental findings and research results in genomic research involving biobanks and archived data sets.
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In the context of a biobank research system, primary researchers (or collection sites) and biobanks should anticipate how they will handle identification or re-identification of contributors for return of IFs and IRRs. They should strive to reach agreement on this in advance, which is reflected in the collection agreement between the primary researcher (or collection site) and biobank. When data and/or samples are deposited in a biobank, either the biobank or a trusted intermediary (sometimes called an “honest broker”) may receive the key to codes (if any) to allow re-identification, rather than counting entirely on the primary research or collection site to maintain the capacity for re-identification over an extended period of time during which research is continuing.