Empirical research on the ethics of genomic research

There is no universally accepted definition of what an incidental finding is [Wolf et al., 2008] and broadly speaking this could include variants of known and unknown clinical significance, variants linked to highly penetrant, serious, life-threatening conditions, non-paternity or ancestry data. For...

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Main Authors: Middleton, Anna, Parker, Michael, Wright, Caroline F, Bragin, Eugene, Hurles, Matthew E
Format: Online
Language:English
Published: Wiley Periodicals, Inc. 2013
Online Access:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3884757/
id pubmed-3884757
recordtype oai_dc
spelling pubmed-38847572014-01-13 Empirical research on the ethics of genomic research Middleton, Anna Parker, Michael Wright, Caroline F Bragin, Eugene Hurles, Matthew E Research Letters There is no universally accepted definition of what an incidental finding is [Wolf et al., 2008] and broadly speaking this could include variants of known and unknown clinical significance, variants linked to highly penetrant, serious, life-threatening conditions, non-paternity or ancestry data. For the purposes of our study, we have adopted a pragmatic distinction between ‘pertinent’ and ‘incidental’ findings as set out in this text. Whilst in the US definitions of incidental findings are becoming accepted in practice [Green et al., 2013] it is still not known how and whether these also apply elsewhere around the world. Wiley Periodicals, Inc. 2013-08 2013-06-27 /pmc/articles/PMC3884757/ /pubmed/23813698 http://dx.doi.org/10.1002/ajmg.a.36067 Text en © 2013 The Authors. American Journal of Medical Genetics Part A</i> Published Wiley Periodicals, Inc. http://creativecommons.org/licenses/by-nc-nd/3.0/ This is an open access article under the terms of the Creative Commons License, which permits use and distribution in any medium, provided the original work is properly cited.
repository_type Open Access Journal
institution_category Foreign Institution
institution US National Center for Biotechnology Information
building NCBI PubMed
collection Online Access
language English
format Online
author Middleton, Anna
Parker, Michael
Wright, Caroline F
Bragin, Eugene
Hurles, Matthew E
spellingShingle Middleton, Anna
Parker, Michael
Wright, Caroline F
Bragin, Eugene
Hurles, Matthew E
Empirical research on the ethics of genomic research
author_facet Middleton, Anna
Parker, Michael
Wright, Caroline F
Bragin, Eugene
Hurles, Matthew E
author_sort Middleton, Anna
title Empirical research on the ethics of genomic research
title_short Empirical research on the ethics of genomic research
title_full Empirical research on the ethics of genomic research
title_fullStr Empirical research on the ethics of genomic research
title_full_unstemmed Empirical research on the ethics of genomic research
title_sort empirical research on the ethics of genomic research
description There is no universally accepted definition of what an incidental finding is [Wolf et al., 2008] and broadly speaking this could include variants of known and unknown clinical significance, variants linked to highly penetrant, serious, life-threatening conditions, non-paternity or ancestry data. For the purposes of our study, we have adopted a pragmatic distinction between ‘pertinent’ and ‘incidental’ findings as set out in this text. Whilst in the US definitions of incidental findings are becoming accepted in practice [Green et al., 2013] it is still not known how and whether these also apply elsewhere around the world.
publisher Wiley Periodicals, Inc.
publishDate 2013
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3884757/
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