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Article
Researcher and Institutional Review Board Chair Perspectives on Incidental Findings in Genomic Research
Genetic testing and molecular biomarkers
  • Janet K. Williams, University of Iowa
  • Sandra Daack-Hirsch, University of Iowa
  • Martha Driessnack, University of Iowa
  • Nancy R Downing, University of Iowa
  • L. Shinkunas
  • D. Brandt
  • C. Simon
Document Type
Article
Peer Reviewed
1
Publication Date
2-1-2012
NLM Title Abbreviation
Genet Test Mol 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.
Disciplines
Citation Information
Janet K. Williams, Sandra Daack-Hirsch, Martha Driessnack, Nancy R Downing, et al.. "Researcher and Institutional Review Board Chair Perspectives on Incidental Findings in Genomic Research" Genetic testing and molecular biomarkers Vol. 16 Iss. 6 (2012) p. 508 - 513 ISSN: 1945-0257
Available at: http://works.bepress.com/sandra_daack-hirsch/48/