Literature DB >> 25592144

Association of Researcher Characteristics with Views on Return of Incidental Findings from Genomic Research.

Julia Wynn1, Josue Martinez2, Jimmy Duong3, Yuan Zhang3, Jo Phelan4, Abby Fyer5, Robert Klitzman5, Paul S Appelbaum5, Wendy K Chung6,7.   

Abstract

Whole exome/ genome sequencing (WES/WGS) is now commonly used in research and is increasingly used in clinical care to identify the genetic basis of rare and unknown diseases. The management of incidental findings (IFs) generated through these analyses is debated within the research community. To examine how views regarding genomic research IFs are associated with researcher characteristics and experiences, we surveyed genetic professionals and assessed the effect of professional background and experience on their opinions. Researchers who did not have clinical training, provide clinical care to research participants, or have prior experience returning research results were in general more inclined to offer return of IFs than their colleagues with these characteristics. Understanding this will be important to fully appreciate the impact that policies on return of genetic IFs could have on participants, researchers, and genomic research.

Entities:  

Keywords:  Genetics research; Genomic results; Genomics; Incidental findings; Return of results; Secondary findings; Whole exome sequencing

Mesh:

Year:  2015        PMID: 25592144      PMCID: PMC4506262          DOI: 10.1007/s10897-014-9817-1

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  23 in total

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

Authors:  Janet K Williams; Sandra Daack-Hirsch; Martha Driessnack; Nancy Downing; Laura Shinkunas; Debra Brandt; Christian Simon
Journal:  Genet Test Mol Biomarkers       Date:  2012-02-21

2.  The incidentalome: a threat to genomic medicine.

Authors:  Isaac S Kohane; Daniel R Masys; Russ B Altman
Journal:  JAMA       Date:  2006-07-12       Impact factor: 56.272

3.  Return of genomic results to research participants: the floor, the ceiling, and the choices in between.

Authors:  Gail P Jarvik; Laura M Amendola; Jonathan S Berg; Kyle Brothers; Ellen W Clayton; Wendy Chung; Barbara J Evans; James P Evans; Stephanie M Fullerton; Carlos J Gallego; Nanibaa' A Garrison; Stacy W Gray; Ingrid A Holm; Iftikhar J Kullo; Lisa Soleymani Lehmann; Cathy McCarty; Cynthia A Prows; Heidi L Rehm; Richard R Sharp; Joseph Salama; Saskia Sanderson; Sara L Van Driest; Marc S Williams; Susan M Wolf; Wendy A Wolf; Wylie Burke
Journal:  Am J Hum Genet       Date:  2014-05-08       Impact factor: 11.025

4.  "I want to know what's in Pandora's Box": comparing stakeholder perspectives on incidental findings in clinical whole genomic sequencing.

Authors:  Anne Townsend; Shelin Adam; Patricia H Birch; Zoe Lohn; Francois Rousseau; Jan M Friedman
Journal:  Am J Med Genet A       Date:  2012-08-17       Impact factor: 2.802

Review 5.  Managing incidental findings in human subjects research: analysis and recommendations.

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

6.  Views of genetics health professionals on the return of genomic results.

Authors:  Megan E Grove; Maya N Wolpert; Mildred K Cho; Sandra Soo-Jin Lee; Kelly E Ormond
Journal:  J Genet Couns       Date:  2013-06-02       Impact factor: 2.537

7.  An empirical examination of the management of return of individual research results and incidental findings in genomic biobanks.

Authors:  Gina Johnson; Frances Lawrenz; Mao Thao
Journal:  Genet Med       Date:  2012-02-23       Impact factor: 8.822

8.  The legal risks of returning results of genomics research.

Authors:  Ellen Wright Clayton; Amy L McGuire
Journal:  Genet Med       Date:  2012-02-09       Impact factor: 8.822

9.  Exploring concordance and discordance for return of incidental findings from clinical sequencing.

Authors:  Robert C Green; Jonathan S Berg; Gerard T Berry; Leslie G Biesecker; David P Dimmock; James P Evans; Wayne W Grody; Madhuri R Hegde; Sarah Kalia; Bruce R Korf; Ian Krantz; Amy L McGuire; David T Miller; Michael F Murray; Robert L Nussbaum; Sharon E Plon; Heidi L Rehm; Howard J Jacob
Journal:  Genet Med       Date:  2012-03-15       Impact factor: 8.822

10.  Clinical application of exome sequencing in undiagnosed genetic conditions.

Authors:  Anna C Need; Vandana Shashi; Yuki Hitomi; Kelly Schoch; Kevin V Shianna; Marie T McDonald; Miriam H Meisler; David B Goldstein
Journal:  J Med Genet       Date:  2012-05-11       Impact factor: 6.318

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  10 in total

1.  Compare and contrast: a cross-national study across UK, USA and Greek experts regarding return of incidental findings from clinical sequencing.

Authors:  Elli G Gourna; Natalie Armstrong; Susan E Wallace
Journal:  Eur J Hum Genet       Date:  2015-06-10       Impact factor: 4.246

2.  Evaluation of Recipients of Positive and Negative Secondary Findings Evaluations in a Hybrid CLIA-Research Sequencing Pilot.

Authors:  Julie C Sapp; Jennifer J Johnston; Kate Driscoll; Alexis R Heidlebaugh; Ane Miren Sagardia; D Nadine Dogbe; Kendall L Umstead; Erin Turbitt; Ilias Alevizos; Jeffrey Baron; Carsten Bönnemann; Brian Brooks; Sandra Donkervoort; Youn Hee Jee; W Marston Linehan; Francis J McMahon; Joel Moss; James C Mullikin; Deborah Nielsen; Eileen Pelayo; Alan T Remaley; Richard Siegel; Helen Su; Carlos Zarate; Teri A Manolio; Barbara B Biesecker; Leslie G Biesecker
Journal:  Am J Hum Genet       Date:  2018-08-16       Impact factor: 11.025

3.  Research Participants' Preferences for Hypothetical Secondary Results from Genomic Research.

Authors:  Julia Wynn; Josue Martinez; Jimmy Duong; Codruta Chiuzan; Jo C Phelan; Abby Fyer; Robert L Klitzman; Paul S Appelbaum; Wendy K Chung
Journal:  J Genet Couns       Date:  2016-12-29       Impact factor: 2.537

4.  Consent for clinical genome sequencing: considerations from the Clinical Sequencing Exploratory Research Consortium.

Authors:  Joon-Ho Yu; Paul S Appelbaum; Kyle B Brothers; Steven Joffe; Tia L Kauffman; Barbara A Koenig; Anya Er Prince; Sarah Scollon; Susan M Wolf; Barbara A Bernhardt; Benjamin S Wilfond
Journal:  Per Med       Date:  2019-07-17       Impact factor: 2.512

5.  Return of individual research results from genomic research: A systematic review of stakeholder perspectives.

Authors:  Danya F Vears; Joel T Minion; Stephanie J Roberts; James Cummings; Mavis Machirori; Mwenza Blell; Isabelle Budin-Ljøsne; Lorraine Cowley; Stephanie O M Dyke; Clara Gaff; Robert Green; Alison Hall; Amber L Johns; Bartha M Knoppers; Stephanie Mulrine; Christine Patch; Eva Winkler; Madeleine J Murtagh
Journal:  PLoS One       Date:  2021-11-08       Impact factor: 3.240

6.  dbBIP: a comprehensive bipolar disorder database for genetic research.

Authors:  Xiaoyan Li; Shunshuai Ma; Wenhui Yan; Yong Wu; Hui Kong; Mingshan Zhang; Xiongjian Luo; Junfeng Xia
Journal:  Database (Oxford)       Date:  2022-07-02       Impact factor: 4.462

7.  Impact of Receiving Secondary Results from Genomic Research: A 12-Month Longitudinal Study.

Authors:  Julia Wynn; Josue Martinez; Jessica Bulafka; Jimmy Duong; Yuan Zhang; Codruta Chiuzan; Jain Preti; Maria L Cremona; Vaidehi Jobanputra; Abby J Fyer; Robert L Klitzman; Paul S Appelbaum; Wendy K Chung
Journal:  J Genet Couns       Date:  2017-11-22       Impact factor: 2.537

8.  Genomic Testing: a Genetic Counselor's Personal Reflection on Three Years of Consenting and Testing.

Authors:  Julia Wynn
Journal:  J Genet Couns       Date:  2015-08-05       Impact factor: 2.537

9.  Exploring neurologists' perspectives on the return of next generation sequencing results to their patients: a needed step in the development of guidelines.

Authors:  Thierry Hurlimann; Iris Jaitovich Groisman; Béatrice Godard
Journal:  BMC Med Ethics       Date:  2018-09-29       Impact factor: 2.652

Review 10.  Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies.

Authors:  Michael P Mackley; Benjamin Fletcher; Michael Parker; Hugh Watkins; Elizabeth Ormondroyd
Journal:  Genet Med       Date:  2016-09-01       Impact factor: 8.822

  10 in total

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