Literature DB >> 23448723

Managing incidental genomic findings: legal obligations of clinicians.

Ellen Wright Clayton1, Susanne Haga, Patricia Kuszler, Emily Bane, Krysta Shutske, Wylie Burke.   

Abstract

PURPOSE: Clinical whole-exome and whole-genome sequencing will result in a broad range of incidental findings, but clinicians' obligations to identify and disclose such findings are a matter of debate. We sought legal cases that could offer insights into clinicians' legal liability.
METHODS: We searched for cases in which incidental findings were related to the cause of action, using the search engines WestLaw, WestLaw Next, Lexis, and Lexis Advance.
RESULTS: We found no case law related to incidental findings from genetic testing but identified eight cases involving incidental findings in medical imaging. These cases suggest that clinicians may face liability for failing to disclose incidental findings that would have offered an opportunity for interventions to improve health outcome, if under the applicable standard of care, they fail to identify or appreciate the significance of the incidental finding or they negligently fail to notify other clinicians and/or the patient of the identified incidental finding. Other cases support liability for failure to refer appropriately to a clinician with greater expertise.
CONCLUSIONS: Clinicians may face liability if they fail to disclose incidental information that could inform interventions to improve health outcome; information lacking clinical actionability is likely to have less import.

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Year:  2013        PMID: 23448723      PMCID: PMC3805501          DOI: 10.1038/gim.2013.7

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  17 in total

Review 1.  Primary care medicine in crisis: toward reconstruction and renewal.

Authors:  Gordon Moore; Jonathan Showstack
Journal:  Ann Intern Med       Date:  2003-02-04       Impact factor: 25.391

Review 2.  Exome sequencing as a tool for Mendelian disease gene discovery.

Authors:  Michael J Bamshad; Sarah B Ng; Abigail W Bigham; Holly K Tabor; Mary J Emond; Deborah A Nickerson; Jay Shendure
Journal:  Nat Rev Genet       Date:  2011-09-27       Impact factor: 53.242

3.  Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.

Authors:  Richard R Fabsitz; Amy McGuire; Richard R Sharp; Mona Puggal; Laura M Beskow; Leslie G Biesecker; Ebony Bookman; Wylie Burke; Esteban Gonzalez Burchard; George Church; Ellen Wright Clayton; John H Eckfeldt; Conrad V Fernandez; Rebecca Fisher; Stephanie M Fullerton; Stacey Gabriel; Francine Gachupin; Cynthia James; Gail P Jarvik; Rick Kittles; Jennifer R Leib; Christopher O'Donnell; P Pearl O'Rourke; Laura Lyman Rodriguez; Sheri D Schully; Alan R Shuldiner; Rebecca K F Sze; Joseph V Thakuria; Susan M Wolf; Gregory L Burke
Journal:  Circ Cardiovasc Genet       Date:  2010-12

Review 4.  Shrinking social space in the doctor-modern patient relationship: a review of forces for, and implications of, homologisation.

Authors:  Stephen Buetow; Annemarie Jutel; Karen Hoare
Journal:  Patient Educ Couns       Date:  2008-09-11

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.  Duty to disclose what? Querying the putative obligation to return research results to participants.

Authors:  F A Miller; R Christensen; M Giacomini; J S Robert
Journal:  J Med Ethics       Date:  2008-03       Impact factor: 2.903

7.  Operational implementation of prospective genotyping for personalized medicine: the design of the Vanderbilt PREDICT project.

Authors:  J M Pulley; J C Denny; J F Peterson; G R Bernard; C L Vnencak-Jones; A H Ramirez; J T Delaney; E Bowton; K Brothers; K Johnson; D C Crawford; J Schildcrout; D R Masys; H H Dilks; R A Wilke; E W Clayton; E Shultz; M Laposata; J McPherson; J N Jirjis; D M Roden
Journal:  Clin Pharmacol Ther       Date:  2012-05-16       Impact factor: 6.875

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.  Deploying whole genome sequencing in clinical practice and public health: meeting the challenge one bin at a time.

Authors:  Jonathan S Berg; Muin J Khoury; James P Evans
Journal:  Genet Med       Date:  2011-06       Impact factor: 8.822

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  22 in total

1.  Discussing molecular testing in oncology care: Comparing patient and physician information preferences.

Authors:  Ana P M Pinheiro; Rachel H Pocock; Jeffrey M Switchenko; Margie D Dixon; Walid L Shaib; Suresh S Ramalingam; Rebecca D Pentz
Journal:  Cancer       Date:  2017-01-31       Impact factor: 6.860

2.  Three clinical experiences with SNP array results consistent with parental incest: a narrative with lessons learned.

Authors:  Benjamin M Helm; Katherine Langley; Brooke Spangler; Samantha Vergano
Journal:  J Genet Couns       Date:  2013-11-13       Impact factor: 2.537

3.  The fiduciary relationship model for managing clinical genomic "incidental" findings.

Authors:  Gabriel Lázaro-Muñoz
Journal:  J Law Med Ethics       Date:  2014       Impact factor: 1.718

4.  WHATIF: An open-source desktop application for extraction and management of the incidental findings from next-generation sequencing variant data.

Authors:  Zhan Ye; Christopher Kadolph; Robert Strenn; Daniel Wall; Elizabeth McPherson; Simon Lin
Journal:  Comput Biol Med       Date:  2015-04-08       Impact factor: 4.589

5.  Pragmatic and Ethical Challenges of Incorporating the Genome into the Electronic Medical Record.

Authors:  Adam A Nishimura; Peter Tarczy-Hornoch; Brian H Shirts
Journal:  Curr Genet Med Rep       Date:  2014-12-01

Review 6.  Living laboratory: whole-genome sequencing as a learning healthcare enterprise.

Authors:  M Angrist; L Jamal
Journal:  Clin Genet       Date:  2014-09-06       Impact factor: 4.438

7.  The Responsibility to Recontact Research Participants after Reinterpretation of Genetic and Genomic Research Results.

Authors:  Yvonne Bombard; Kyle B Brothers; Sara Fitzgerald-Butt; Nanibaa' A Garrison; Leila Jamal; Cynthia A James; Gail P Jarvik; Jennifer B McCormick; Tanya N Nelson; Kelly E Ormond; Heidi L Rehm; Julie Richer; Emmanuelle Souzeau; Jason L Vassy; Jennifer K Wagner; Howard P Levy
Journal:  Am J Hum Genet       Date:  2019-04-04       Impact factor: 11.025

8.  Clinical Sequencing Exploratory Research Consortium: Accelerating Evidence-Based Practice of Genomic Medicine.

Authors:  Robert C Green; Katrina A B Goddard; Gail P Jarvik; Laura M Amendola; Paul S Appelbaum; Jonathan S Berg; Barbara A Bernhardt; Leslie G Biesecker; Sawona Biswas; Carrie L Blout; Kevin M Bowling; Kyle B Brothers; Wylie Burke; Charlisse F Caga-Anan; Arul M Chinnaiyan; Wendy K Chung; Ellen W Clayton; Gregory M Cooper; Kelly East; James P Evans; Stephanie M Fullerton; Levi A Garraway; Jeremy R Garrett; Stacy W Gray; Gail E Henderson; Lucia A Hindorff; Ingrid A Holm; Michelle Huckaby Lewis; Carolyn M Hutter; Pasi A Janne; Steven Joffe; David Kaufman; Bartha M Knoppers; Barbara A Koenig; Ian D Krantz; Teri A Manolio; Laurence McCullough; Jean McEwen; Amy McGuire; Donna Muzny; Richard M Myers; Deborah A Nickerson; Jeffrey Ou; Donald W Parsons; Gloria M Petersen; Sharon E Plon; Heidi L Rehm; J Scott Roberts; Dan Robinson; Joseph S Salama; Sarah Scollon; Richard R Sharp; Brian Shirts; Nancy B Spinner; Holly K Tabor; Peter Tarczy-Hornoch; David L Veenstra; Nikhil Wagle; Karen Weck; Benjamin S Wilfond; Kirk Wilhelmsen; Susan M Wolf; Julia Wynn; Joon-Ho Yu
Journal:  Am J Hum Genet       Date:  2016-05-12       Impact factor: 11.025

9.  Physicians' duty to recontact and update genetic advice.

Authors:  Yvonne A Stevens; Grant D Senner; Gary E Marchant
Journal:  Per Med       Date:  2017-06-08       Impact factor: 2.512

10.  Translating personalized medicine using new genetic technologies in clinical practice: the ethical issues.

Authors:  Kelly E Ormond; Mildred K Cho
Journal:  Per Med       Date:  2014       Impact factor: 2.512

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