Researcher and institutional review board chair perspectives on incidental findings in genomic research.

Genetic Testing and Molecular Biomarkers
Janet K WilliamsChristian M Simon

Abstract

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). 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. 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.

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Citations

Apr 11, 2013·Journal of Community Genetics·Martha DriessnackJanet K Williams
Sep 17, 2013·European Journal of Medical Genetics·Gabrielle M ChristenhuszKris Dierickx
May 4, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Rachel B RamoniSteven Joffe
May 25, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Ellen Wright Clayton, Susan E Kelly
Jan 10, 2012·Journal of Empirical Research on Human Research Ethics : JERHRE·Christian M SimonMartha Driessnack
Sep 28, 2013·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Robert KlitzmanWendy K Chung
Nov 13, 2015·Future Oncology·Erin HofstatterLajos Pusztai
Nov 20, 2015·Genetics in Medicine : Official Journal of the American College of Medical Genetics·Catherine GliwaBenjamin E Berkman
Aug 1, 2015·Genome Medicine·Sebastian SchuolEva C Winkler
May 7, 2013·American Journal of Human Genetics·Leslie G Biesecker
Sep 2, 2020·International Journal of Geriatric Psychiatry·Marta FaddaEmiliano Albanese

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Methods Mentioned

BETA
genotyping

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