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Chunk #73 — 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

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Managing incidental findings and research results in genomic research involving biobanks and archived data sets.
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Part of offering strong net benefit is actionability. This idea has appeared in multiple recommendations documents, but is variously understood. In keeping with Fabsitz et al., we suggest that the term should be understood broadly and, again, from the contributor’s perspective. The core question is whether return of the IF or IRR offers the contributor and/or the contributor’s clinician the option to take action with significant potential to alter the onset or course of disease, such as by allowing heightened surveillance, preventive actions, early diagnosis, or treatment options. While some commentators might understand actionability narrowly from the clinician’s perspective (can we prevent or cure?), we instead define actionability from the perspective of the individual facing the risk and potential disease (can I and/or my clinician take action to prevent or alter the course of my condition or to tailor my treatment?).