Literature DB >> 25492269

Disclosure of incidental findings in cancer genomic research: investigators' perceptions on obligations and barriers.

E Kleiderman1, D Avard1, A Besso1, S Ali-Khan1, G Sauvageau2,3,4, J Hébert2,3,4.   

Abstract

Although there has been significant research surrounding incidental findings (IFs), the guidelines and information provided to investigators remain unspecific, unclear, and often generalize the course of action to everyone in the field. We explored the perceptions and experiences of investigators regarding the return of IFs in genetic research. Researchers and clinician-researchers were invited to participate in semi-structured telephone interviews in Quebec and Ontario. Twenty professionals participated, and thematic analysis was used to analyze the transcriptions. Four contextual elements emerged: (i) degree of significance of results, (ii) respect for persons, (iii) infrastructure implications, and (iv) professional responsibilities. Our findings demonstrate that all investigators raised similar contextual elements surrounding the return of IFs. However, some nuances in participants' experiences of the understanding of professional responsibilities also emerged. Because of the existing nuances, a one-size-fits-all approach is inappropriate, suggesting that context ought to be considered in decisions about IFs.
© 2014 The Authors. Clinical Genetics published by John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

Entities:  

Keywords:  bioethics; cancer research; genetics; genomics; incidental findings; investigator duties; research ethics; return of results

Mesh:

Year:  2014        PMID: 25492269     DOI: 10.1111/cge.12540

Source DB:  PubMed          Journal:  Clin Genet        ISSN: 0009-9163            Impact factor:   4.438


  6 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.  Public's Views toward Return of Secondary Results in Genomic Sequencing: It's (Almost) All about the Choice.

Authors:  Kerry A Ryan; Raymond G De Vries; Wendy R Uhlmann; J Scott Roberts; Michele C Gornick
Journal:  J Genet Couns       Date:  2017-03-29       Impact factor: 2.537

3.  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

4.  Psychiatric genetics researchers' views on offering return of results to individual participants.

Authors:  Kristin M Kostick; Cody Brannan; Stacey Pereira; Gabriel Lázaro-Muñoz
Journal:  Am J Med Genet B Neuropsychiatr Genet       Date:  2018-10-25       Impact factor: 3.568

5.  Controversies among Cancer Registry Participants, Genomic Researchers, and Institutional Review Boards about Returning Participants' Genomic Results.

Authors:  Karen L Edwards; Deborah Goodman; Catherine O Johnson; Lari Wenzel; Celeste Condit; Deborah Bowen
Journal:  Public Health Genomics       Date:  2018-09-18       Impact factor: 2.000

6.  Whether, when, how, and how much? General public's and cancer patients' views about the disclosure of genomic secondary findings.

Authors:  Jude Emmanuel Cléophat; Michel Dorval; Zaki El Haffaf; Jocelyne Chiquette; Stephanie Collins; Benjamin Malo; Vincent Fradet; Yann Joly; Hermann Nabi
Journal:  BMC Med Genomics       Date:  2021-06-26       Impact factor: 3.063

  6 in total

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