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Chunk #22 — (2) The Varieties of 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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Uncertainty arises in the course of making meaning and use of information from genomic research. As genomics illustrates, biomedical research is increasingly making massive amounts of data about individual patients and research participants readily available long before the clinical significance of that information can be established. Presentations at the Congress [e.g., D-3] provided a wealth of insights about the impact of genomic information, good ways to provide that information, counsel people about its meaning, and educate clinicians and the general public about its limits, given a high degree of uncertainty. What is learned from ELSI research can inform a reflexive, iterative developmental process, whereby research moves from description to prescription and back again, in response to what has been learned about how patients and the public understand and use genomic information.