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.
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.
Authors: Amy A Lemke; Susan B Trinidad; Karen L Edwards; Helene Starks; Georgia L Wiesner Journal: J Empir Res Hum Res Ethics Date: 2010-03 Impact factor: 1.742
Authors: Christian M Simon; Janet K Williams; Laura Shinkunas; Debra Brandt; Sandra Daack-Hirsch; Martha Driessnack Journal: J Empir Res Hum Res Ethics Date: 2011-12 Impact factor: 1.742
Authors: Susan M Wolf; Frances P Lawrenz; Charles A Nelson; Jeffrey P Kahn; Mildred K Cho; Ellen Wright Clayton; Joel G Fletcher; Michael K Georgieff; Dale Hammerschmidt; Kathy Hudson; Judy Illes; Vivek Kapur; Moira A Keane; Barbara A Koenig; Bonnie S Leroy; Elizabeth G McFarland; Jordan Paradise; Lisa S Parker; Sharon F Terry; Brian Van Ness; Benjamin S Wilfond Journal: J Law Med Ethics Date: 2008 Impact factor: 1.718
Authors: Timothy Caulfield; Amy L McGuire; Mildred Cho; Janet A Buchanan; Michael M Burgess; Ursula Danilczyk; Christina M Diaz; Kelly Fryer-Edwards; Shane K Green; Marc A Hodosh; Eric T Juengst; Jane Kaye; Laurence Kedes; Bartha Maria Knoppers; Trudo Lemmens; Eric M Meslin; Juli Murphy; Robert L Nussbaum; Margaret Otlowski; Daryl Pullman; Peter N Ray; Jeremy Sugarman; Michael Timmons Journal: PLoS Biol Date: 2008-03-25 Impact factor: 8.029
Authors: Debra S Brandt; Laura Shinkunas; Stephen L Hillis; Sandra E Daack-Hirsch; Martha Driessnack; Nancy R Downing; Megan F Liu; Lisa L Shah; Janet K Williams; Christian M Simon Journal: J Genet Couns Date: 2013-04-02 Impact factor: 2.537
Authors: Shuang Wang; Luca Bonomi; Wenrui Dai; Feng Chen; Cynthia Cheung; Cinnamon S Bloss; Samuel Cheng; Xiaoqian Jiang Journal: IEEE Trans Big Data Date: 2016-09-13
Authors: Julia Wynn; Josue Martinez; Jimmy Duong; Yuan Zhang; Jo Phelan; Abby Fyer; Robert Klitzman; Paul S Appelbaum; Wendy K Chung Journal: J Genet Couns Date: 2015-01-17 Impact factor: 2.537
Authors: Christian M Simon; Janet K Williams; Laura Shinkunas; Debra Brandt; Sandra Daack-Hirsch; Martha Driessnack Journal: J Empir Res Hum Res Ethics Date: 2011-12 Impact factor: 1.742
Authors: S Daack-Hirsch; M Driessnack; A Hanish; V A Johnson; L L Shah; C M Simon; J K Williams Journal: Clin Genet Date: 2013-05-03 Impact factor: 4.438
Authors: Martha Driessnack; Sandra Daack-Hirsch; Nancy Downing; Alyson Hanish; Lisa L Shah; Mohammed Alasagheirin; Christian M Simon; Janet K Williams Journal: J Community Genet Date: 2013-04-10