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Chunk #23 — (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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It was the rare presentation in the Congress that did not mention uncertainty as a critical feature of the understanding and use of genomic information in all contexts. A wide range of genetic screening and testing services, especially direct-to-consumer genetic screening/testing, attempts to make use of new information about genetic associations, variations, susceptibilities, and the like as predictive information for prevention and other decision-making purposes, seeking to translate data of uncertain meaning rapidly into practice. The ambiguities of understanding surrounding research into novel genomic technologies like exome and whole genome sequencing and high-resolution microarrays [G-1] exemplify this problem. A panel addressing non-invasive prenatal genetic testing [G-3] likewise considered the ways in which ease of implementation of a new technology can lead to unconsidered, even unfettered use without regard to genuine usefulness — in this instance, uncertainty about how this more readily available but still ambiguous information should be used in decisions about pregnancy and birth.