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  1. Offering and Returning Secondary Findings in the Context of Exome Sequencing for Hearing Loss: Clinicians’ Views and Experiences.Lauren Notini, Clara Gaff, Julian Savulescu & Danya F. Vears - 2023 - AJOB Empirical Bioethics 14 (2):74-83.
    Background There is ongoing debate regarding whether and under which circumstances secondary findings (SF) should be offered in the pediatric context. Although studies have examined patient perspectives on receiving SF, little research has been conducted examining the experiences of clinicians offering SF to parents of newborns receiving genomic sequencing for a recently diagnosed medical condition.Methods To address this, we conducted qualitative interviews exploring the views and experiences of 12 clinicians who offered SF to parents of infants who had diagnostic exome (...)
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  • “What if There's Something Wrong with Her?”‐How Biomedical Technologies Contribute to Epistemic Injustice in Healthcare.Joel Michael Reynolds - 2020 - Southern Journal of Philosophy 58 (1):161-185.
    While there is a steadily growing literature on epistemic injustice in healthcare, there are few discussions of the role that biomedical technologies play in harming patients in their capacity as knowers. Through an analysis of newborn and pediatric genetic and genomic sequencing technologies (GSTs), I argue that biomedical technologies can lead to epistemic injustice through two primary pathways: epistemic capture and value partitioning. I close by discussing the larger ethical and political context of critical analyses of GSTs and their broader (...)
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  • Whole genome sequencing in children: ethics, choice and deliberation.Ainsley J. Newson - 2017 - Journal of Medical Ethics 43 (8):540-542.
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  • Are Parents Really Obligated to Learn as Much as Possible about Their Children's Genomes?Josephine Johnston & Eric Juengst - 2018 - Hastings Center Report 48 (S2):14-15.
    As new parents quickly learn, parenting always involves choosing your battles. Ideally, parents have the freedom to make those moral choices without the prejudice of an unreasonable or premature inflicted ought. Resolving the predictive uncertainties of genomic information is the professional responsibility of the biomedical community, just as clarifying the impact of global warming or assessing the risks of rising multidrug resistance is the responsibility of similar specialists. Until sequencing can give parents clear and meaningful information that they can use (...)
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  • The Need to Consider Context: A Systematic Review of Factors Involved in the Consent Process for Genetic Tests from the Perspective of Patients.Frédéric Coulombe & Anne-Marie Laberge - 2024 - AJOB Empirical Bioethics 15 (2):93-107.
    Background: Informed consent for genetic tests is a well-established practice. It should be based on good quality information and in keeping with the patient’s values. Existing informed consent assessment tools assess knowledge and values. Nevertheless, there is no consensus on what specific elements need to be discussed or considered in the consent process for genetic tests.Methods: We performed a systematic review to identify all factors involved in the decision-making and consent process about genetic testing, from the perspective of patients. Through (...)
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