Document Type

Article

Peer Reviewed

1

Publication Date

2-1-2012

NLM Title Abbreviation

Genet Test Mol Biomarkers

Journal/Book/Conference Title

Genetic testing and molecular biomarkers

PubMed ID

22352737

DOI of Published Version

10.1089/gtmb.2011.0248

Abstract

Aims: Genomic research can produce findings unrelated to a study's aims. The purpose of this study was to examine researcher and Institutional Review Board (IRB) chair perspectives on genomic incidental findings (GIFs). Methods: Nineteen genomic researchers and 34 IRB chairs from 42 institutions participated in semi-structured telephone interviews. Researchers and chairs described GIFs within their respective roles. Few had direct experience with disclosure of GIFs. Researchers favored policies where a case by case determination regarding whether GIF disclosure would be offered after discovery, whereas IRB chairs preferred policies where procedures for disclosure would be determined prior to approval of the research. Conclusions: Researcher and IRB chair perspectives on management of GIFs overlap, but each group provides a unique perspective on decisions regarding disclosure of GIFs in research. Engagement of both groups is essential in efforts to provide guidance for researchers and IRBs regarding disclosure of GIFs in research.

Journal Article Version

Accepted Manuscript

Published Article/Book Citation

Genetic testing and molecular biomarkers, 16:6 (2012) pp.508-513. DOI:10.1089/gtmb.2011.0248.

Rights

Copyright © Mary Ann Liebert, Inc., 2012. Posted by permission.

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URL

https://ir.uiowa.edu/nursing_pubs/1708