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  1. Ethical signposts for clinical geneticists in secondary variant and incidental finding disclosure discussions.Gabrielle M. Christenhusz, Koenraad Devriendt, Hilde Van Esch & Kris Dierickx - 2015 - Medicine, Health Care and Philosophy 18 (3):361-370.
    While ethical and empirical interest in so-called secondary variants and incidental findings in clinical genetics contexts is growing, critical reflection on the ethical foundations of the various recommendations proposed is thus far largely lacking. We examine and critique the ethical justifications of the three most prominent disclosure positions: briefly, the clinical geneticist decides, a joint decision, and the patient decides. Subsequently, instead of immediately developing a new disclosure option, we explore relevant foundational ethical values and norms, drawing on the normative (...)
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  • A Framework for Unrestricted Prenatal Whole-Genome Sequencing: Respecting and Enhancing the Autonomy of Prospective Parents.Stephanie C. Chen & David T. Wasserman - 2017 - American Journal of Bioethics 17 (1):3-18.
    Noninvasive, prenatal whole genome sequencing may be a technological reality in the near future, making available a vast array of genetic information early in pregnancy at no risk to the fetus or mother. Many worry that the timing, safety, and ease of the test will lead to informational overload and reproductive consumerism. The prevailing response among commentators has been to restrict conditions eligible for testing based on medical severity, which imposes disputed value judgments and devalues those living with eligible conditions. (...)
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  • Induced Pluripotent Stem Cell-Based Systems for Personalising Epilepsy Treatment: Research Ethics Challenges and New Insights for the Ethics of Personalised Medicine.Mary Jean Walker, Jane Nielsen, Eliza Goddard, Alex Harris & Katrina Hutchison - 2022 - American Journal of Bioethics Neuroscience 13 (2):120-131.
    This paper examines potential ethical and legal issues arising during the research, develop- ment and clinical use of a proposed strategy in personalized medicine (PM): using human induced pluripotent stem cell (iPSC)-derived tissue cultures as predictive models of individ- ual patients to inform treatment decisions. We focus on epilepsy treatment as a likely early application of this strategy, for which early-stage stage research is underway. In relation to the research process, we examine issues associated with biological samples; data; health; vulnerable (...)
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  • Fetal information as shared information: using NIPT to test for adult-onset conditions.Michelle Taylor-Sands & Hilary Bowman-Smart - 2021 - Monash Bioethics Review 39 (Suppl 1):82-102.
    The possibilities of non-invasive prenatal testing (NIPT) are expanding, and the use of NIPT for adult-onset conditions may become widely available in the near future. If parents use NIPT to test for these conditions, and the pregnancy is continued, they will have information about the child’s genetic predisposition from birth. In this paper, we argue that prospective parents should be able to access NIPT for an adult-onset condition, even when they have no intention to terminate the pregnancy. We begin by (...)
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  • The Right to Know: A Revised Standard for Reporting Incidental Findings.G. Owen Schaefer & Julian Savulescu - 2018 - Hastings Center Report 48 (2):22-32.
    The “best-medical-interests” standard for reporting findings does not go far enough. Research subjects have a right to know about any comprehensible piece of information about them that is generated by research in which they are participating. An even broader standard may sometimes be appropriate: if subjects agree to accept information that they may not understand, then all information may be disclosed.
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  • Stigmatization of Not-Knowing as a Public Health Tool.Johann-Christian Põder - 2021 - Cambridge Quarterly of Healthcare Ethics 30 (2):328-342.
    Predictive interventions and practices are becoming a defining feature of medicine. The author points out that according to the inner logic and external supporters of modern medicine, participating in healthcare increasingly means participating in knowing, sharing, and using of predictive information. At the same time, the author addresses the issue that predictive information may also have problematic side effects like overdiagnosis, health-related anxiety, and worry as well as impacts on personal life plans. The question is raised: Should we resort to (...)
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  • Incidental findings of uncertain significance: To know or not to know - that is not the question.Bjørn Hofmann - 2016 - BMC Medical Ethics 17 (1):1-9.
    BackgroundAlthough the “right not to know” is well established in international regulations, it has been heavily debated. Ubiquitous results from extended exome and genome analysis have challenged the right not to know. American College of Medical Genetics and Genomics Recommendations urge to inform about incidental findings that pretend to be accurate and actionable. However, ample clinical cases raise the question whether these criteria are met. Many incidental findings are of uncertain significance. The eager to feedback information appears to enter the (...)
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