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Chunk #25 — (2) The Varieties of Uncertainty — (a) Clinical Uncertainty

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What research ethics should learn from genomics and society research: lessons from the ELSI Congress of 2011.
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The translation of recently discovered genetic information into clinical care was addressed by a panel [E-4] presenting the results of a project examining the implications of identifying mutations associated with Long QT syndrome, a cause of sudden unexpected cardiac death. Family decision-making has particular significance in Long QT syndrome, especially regarding questions of whether and how to involve potentially affected adolescents or young adults who may be particularly distressed by uncertainty of information about at-risk status and risk-reducing interventions.