Literature DB >> 24496062

Availability of treatment drives decisions of genetic health professionals about disclosure of incidental findings.

Erin Turbitt1, Michelle M Wiest2, Jane L Halliday3, David J Amor4, Sylvia A Metcalfe1.   

Abstract

Contrasting opinions exist regarding the disclosure of incidental findings detected through clinical genomic testing. This study used a discrete choice experiment to investigate genetic health professionals' preferences for the disclosure of incidental findings in an Australian paediatric setting. Four attributes of conditions relating to incidental findings were investigated: availability of prevention and treatment, chance of symptoms ever developing, age of onset and severity. Questionnaires from 59 Australian genetic health professionals were analysed. Results show that when evaluating incidental findings for disclosure, these professionals value the availability of prevention and treatment for the condition above all other characteristics included in the study. The framework of this discrete choice experiment can be used to investigate the preferences of other stakeholders such as paediatricians and parents about disclosure of incidental findings. The results of this study may be considered when assessing which categories of incidental findings are most suitable for disclosure in clinical practice.

Mesh:

Year:  2014        PMID: 24496062      PMCID: PMC4169537          DOI: 10.1038/ejhg.2014.11

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  18 in total

1.  Ethical issues in genetic counseling: a comparison of M.S. counselor and medical geneticist perspectives.

Authors:  Deborah F Pencarinha; Nora K Bell; Janice G Edwards; Robert G Best
Journal:  J Genet Couns       Date:  1992-03       Impact factor: 2.537

2.  Educating genetic counselors in Australia: developing an international perspective.

Authors:  Margaret A Sahhar; Mary-Anne Young; Leslie J Sheffield; Maryanne Aitken
Journal:  J Genet Couns       Date:  2005-08       Impact factor: 2.537

3.  A comparative analysis of ethical and professional challenges experienced by Australian and U.S. genetic counselors.

Authors:  Sarah Alliman; Patricia McCarthy Veach; Dianne M Bartels; Fengqin Lian; Carolyn James; Bonnie S LeRoy
Journal:  J Genet Couns       Date:  2009-05-19       Impact factor: 2.537

Review 4.  Incidental findings in genetic research and clinical diagnostic tests: a systematic review.

Authors:  Leigh Jackson; Lesley Goldsmith; Anita O'Connor; Heather Skirton
Journal:  Am J Med Genet A       Date:  2012-11-19       Impact factor: 2.802

5.  Eliciting public preferences for healthcare: a systematic review of techniques.

Authors:  M Ryan; D A Scott; C Reeves; A Bate; E R van Teijlingen; E M Russell; M Napper; C M Robb
Journal:  Health Technol Assess       Date:  2001       Impact factor: 4.014

6.  "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

7.  Conducting discrete choice experiments to inform healthcare decision making: a user's guide.

Authors:  Emily Lancsar; Jordan Louviere
Journal:  Pharmacoeconomics       Date:  2008       Impact factor: 4.981

8.  Point-counterpoint. Ethics and genomic incidental findings.

Authors:  Amy L McGuire; Steven Joffe; Barbara A Koenig; Barbara B Biesecker; Laurence B McCullough; Jennifer S Blumenthal-Barby; Timothy Caulfield; Sharon F Terry; Robert C Green
Journal:  Science       Date:  2013-05-16       Impact factor: 47.728

Review 9.  Array CGH in patients with learning disability (mental retardation) and congenital anomalies: updated systematic review and meta-analysis of 19 studies and 13,926 subjects.

Authors:  Gurdeep S Sagoo; Adam S Butterworth; Simon Sanderson; Charles Shaw-Smith; Julian P T Higgins; Hilary Burton
Journal:  Genet Med       Date:  2009-03       Impact factor: 8.822

10.  A framework to start the debate on neonatal screening policies in the EU: an Expert Opinion Document.

Authors:  Martina C Cornel; Tessel Rigter; Stephanie S Weinreich; Peter Burgard; Georg F Hoffmann; Martin Lindner; J Gerard Loeber; Kathrin Rupp; Domenica Taruscio; Luciano Vittozzi
Journal:  Eur J Hum Genet       Date:  2013-05-08       Impact factor: 4.246

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  2 in total

1.  Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing.

Authors:  Joon-Ho Yu; Tanya M Harrell; Seema M Jamal; Holly K Tabor; Michael J Bamshad
Journal:  Am J Hum Genet       Date:  2014-06-26       Impact factor: 11.025

2.  Is "incidental finding" the best term?: a study of patients' preferences.

Authors:  Nina Tan; Laura M Amendola; Julianne M O'Daniel; Amber Burt; Martha J Horike-Pyne; Lacey Boshe; Gail E Henderson; Christine Rini; Myra I Roche; Fuki M Hisama; Wylie Burke; Benjamin Wilfond; Gail P Jarvik
Journal:  Genet Med       Date:  2016-08-04       Impact factor: 8.822

  2 in total

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