Ethical considerations for the return of incidental findings in ophthalmic genomic research
journal contributionposted on 2023-05-18, 20:55 authored by Souzeau, E, Kathryn BurdonKathryn Burdon, David MackeyDavid Mackey, Alexander HewittAlexander Hewitt, Savarirayan, R, Margaret OtlowskiMargaret Otlowski, Craig, JE
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.
Publication titleTranslational Vision Science and Technology
Department/SchoolMenzies Institute for Medical Research
PublisherAssociation for Research in Vision and Ophthalmology
Place of publicationUnited States
Rights statementCopyright 2016 the authors Licensed under Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0) https://creativecommons.org/licenses/by-nc-nd/4.0/