Availability of treatment drives decisions of genetic health professionals about disclosure of incidental findings View Full Text


Ontology type: schema:ScholarlyArticle      Open Access: True


Article Info

DATE

2014-10

AUTHORS

Erin Turbitt, Michelle M Wiest, Jane L Halliday, David J Amor, Sylvia A Metcalfe

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. More... »

PAGES

1225

References to SciGraph publications

  • 2013-11. Recommendations for returning genomic incidental findings? We need to talk! in GENETICS IN MEDICINE
  • 2014-02. Decision-making process for conditions nominated to the Recommended Uniform Screening Panel: statement of the US Department of Health and Human Services Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children in GENETICS IN MEDICINE
  • 2013-11. Return of incidental findings in genomic medicine: measuring what patients value—development of an instrument to measure preferences for information from next-generation testing (IMPRINT) in GENETICS IN MEDICINE
  • 2013-07. ACMG recommendations for reporting of incidental findings in clinical exome and genome sequencing in GENETICS IN MEDICINE
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  • 2011-06. Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time in GENETICS IN MEDICINE
  • 2008-08. Conducting Discrete Choice Experiments to Inform Healthcare Decision Making in PHARMACOECONOMICS
  • 2009-03. 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 in GENETICS IN MEDICINE
  • 1992-03. Ethical issues in genetic counseling: A comparison of M.S. counselor and medical geneticist perspectives in JOURNAL OF GENETIC COUNSELING
  • 2005-08. Educating Genetic Counselors in Australia: Developing an International Perspective in JOURNAL OF GENETIC COUNSELING
  • 2013-06. Whole-genome sequencing in health care in EUROPEAN JOURNAL OF HUMAN GENETICS
  • 2009-08. A Comparative Analysis of Ethical and Professional Challenges Experienced by Australian and U.S. Genetic Counselors in JOURNAL OF GENETIC COUNSELING
  • Identifiers

    URI

    http://scigraph.springernature.com/pub.10.1038/ejhg.2014.11

    DOI

    http://dx.doi.org/10.1038/ejhg.2014.11

    DIMENSIONS

    https://app.dimensions.ai/details/publication/pub.1025899362

    PUBMED

    https://www.ncbi.nlm.nih.gov/pubmed/24496062


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