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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Bibliographic Details
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/
Description
Summary: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.