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Review
. 2013 Jun;29(6):375-82.
doi: 10.1016/j.tig.2013.02.001. Epub 2013 Feb 28.

Evolving approaches to the ethical management of genomic data

Jean E McEwen  1 , Joy T Boyer, Kathie Y Sun
Affiliations
Review

Evolving approaches to the ethical management of genomic data

Jean E McEwen et al. Trends Genet. 2013 Jun.

Abstract

The ethical landscape in the field of genomics is rapidly shifting. Plummeting sequencing costs, along with ongoing advances in bioinformatics, now make it possible to generate an enormous volume of genomic data about vast numbers of people. The informational richness, complexity, and frequently uncertain meaning of these data, coupled with evolving norms surrounding the sharing of data and samples and persistent privacy concerns, have generated a range of approaches to the ethical management of genomic information. As calls increase for the expanded use of broad or even open consent, and as controversy grows about how best to handle incidental genomic findings, these approaches, informed by normative analysis and empirical data, will continue to evolve alongside the science.

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Figures

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Figure I
Cover for the popular book, “The Immortal Life of Henrietta Lacks.” Jacket Cover copyright © 2011 by Crown Publishers, an imprint of the Crown Publishing Group, a division of Random House, Inc., from THE IMMORTAL LIFE OF HENRIETTA LACKS by Rebecca Skloot. Used by permission of Crown Publishers, a division of Random House, Inc.
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Figure I
Messaging for public awareness campaign on state newborn screening program. Photo copyright © 2010 by Zazzle, Inc. Used by permission of Zazzle, Inc. and Citizens’ Council for Health Freedom.
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Figure I
Havasupai Indian woman. Photo by Grand Canyon NPS / CC-BY-2.0. From Wikimedia Commons.
See this image and copyright information in PMC

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