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

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dc.contributor.author Souzeau, Emmanuelle
dc.contributor.author Burdon, Kathryn Penelope
dc.contributor.author Mackey, David A
dc.contributor.author Hewitt, Alex W
dc.contributor.author Savarirayan, Ravi
dc.contributor.author Otlowski, M
dc.contributor.author Craig, Jamie E
dc.date.accessioned 2016-04-12T04:56:51Z
dc.date.available 2016-04-12T04:56:51Z
dc.date.issued 2016
dc.description This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. Available from PubMed Central (PMC).http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4757467/ en
dc.description.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. en
dc.identifier.citation Souzeau E, Burdon KP, Mackey DA, Hewitt AW, Savarirayan R, Otlowski M, Craig JE. Ethical Considerations for the Return of Incidental Findings in Ophthalmic Genomic Research. Translational Vision Science & Technology. 2016 Feb 9;5(1):3. eCollection 2016 Feb. en
dc.identifier.doi https://doi.org/10.1167/tvst.5.1.3 en
dc.identifier.issn 2164-2591
dc.identifier.uri http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4757467/
dc.identifier.uri http://hdl.handle.net/2328/36018
dc.language.iso en
dc.oaire.license.condition.license CC-BY-NC-ND
dc.publisher Association for Research in Vision and Ophthalmology (ARVO) en
dc.relation http://purl.org/au-research/grants/NHMRC/1023911 en
dc.relation.grantnumber NHMRC/1023911 en
dc.rights Copyright 2016 Association for Research in Vision and Ophthalmology (ARVO) en
dc.rights.holder Association for Research in Vision and Ophthalmology (ARVO) en
dc.title Ethical Considerations for the Return of Incidental Findings in Ophthalmic Genomic Research en
dc.type Article en
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