University Library
  • Login
A gateway to Melbourne's research publications
Minerva Access is the University's Institutional Repository. It aims to collect, preserve, and showcase the intellectual output of staff and students of the University of Melbourne for a global audience.
View Item 
  • Minerva Access
  • Medicine, Dentistry & Health Sciences
  • Melbourne Medical School
  • Ophthalmology (Eye & Ear Hospital)
  • Ophthalmology (Eye & Ear Hospital) - Research Publications
  • View Item
  • Minerva Access
  • Medicine, Dentistry & Health Sciences
  • Melbourne Medical School
  • Ophthalmology (Eye & Ear Hospital)
  • Ophthalmology (Eye & Ear Hospital) - Research Publications
  • View Item
JavaScript is disabled for your browser. Some features of this site may not work without it.

    Ethical Considerations for the Return of Incidental Findings in Ophthalmic Genomic Research

    Thumbnail
    Download
    Published version (624.2Kb)

    Citations
    Scopus
    Web of Science
    Altmetric
    6
    6
    Author
    Souzeau, E; Burdon, KP; Mackey, DA; Hewitt, AW; Savarirayan, R; Otlowski, M; Craig, JE
    Date
    2016-01-01
    Source Title
    Translational Vision Science and Technology
    Publisher
    ASSOC RESEARCH VISION OPHTHALMOLOGY INC
    University of Melbourne Author/s
    Savarirayan, Ravi; Mackey, David; Hewitt, Alexander; Craig, Jamie
    Affiliation
    Ophthalmology (Eye & Ear Hospital)
    Centre for Eye Research Australia (CERA)
    Paediatrics (RCH)
    Metadata
    Show full item record
    Document Type
    Journal Article
    Citations
    Souzeau, E., Burdon, K. P., Mackey, D. A., Hewitt, A. W., Savarirayan, R., Otlowski, M. & Craig, J. E. (2016). Ethical Considerations for the Return of Incidental Findings in Ophthalmic Genomic Research. TRANSLATIONAL VISION SCIENCE & TECHNOLOGY, 5 (1), https://doi.org/10.1167/tvst.5.1.3.
    Access Status
    Open Access
    URI
    http://hdl.handle.net/11343/258406
    DOI
    10.1167/tvst.5.1.3
    Abstract
    Whole genome and whole exome sequencing technologies are being increasingly used in research. However, they have the potential to identify incidental findings (IF), findings not related to the indication of the test, raising questions regarding researchers' responsibilities toward the return of this information to participants. In this study we discuss the ethical considerations related to the return of IF to research participants, emphasizing that the type of the study matters and describing the current practice standards. There are currently no legal obligations for researchers to return IF to participants, but some viewpoints consider that researchers might have an ethical one to return IF of clinical validity and clinical utility and that are actionable. The reality is that most IF are complex to interpret, especially since they were not the indication of the test. The clinical utility often depends on the participants' preferences, which can be challenging to conciliate and relies on participants' understanding. In summary, in the context of a lack of clear guidance, researchers need to have a clear plan for the disclosure or nondisclosure of IF from genomic research, balancing their research goals and resources with the participants' rights and their duty not to harm.

    Export Reference in RIS Format     

    Endnote

    • Click on "Export Reference in RIS Format" and choose "open with... Endnote".

    Refworks

    • Click on "Export Reference in RIS Format". Login to Refworks, go to References => Import References


    Collections
    • Minerva Elements Records [45689]
    • Paediatrics (RCH) - Research Publications [1852]
    • Centre for Eye Research Australia (CERA) - Research Publications [56]
    • Ophthalmology (Eye & Ear Hospital) - Research Publications [450]
    Minerva AccessDepositing Your Work (for University of Melbourne Staff and Students)NewsFAQs

    BrowseCommunities & CollectionsBy Issue DateAuthorsTitlesSubjectsThis CollectionBy Issue DateAuthorsTitlesSubjects
    My AccountLoginRegister
    StatisticsMost Popular ItemsStatistics by CountryMost Popular Authors