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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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  • Differences in Conceptual Understanding of the “Actionability” of Incidental Findings and the Resultant Difference in Ethical Responsibility: An Empirical Study in Japan.Tomohide Ibuki, Keiichiro Yamamoto & Kenji Matsui - 2020 - AJOB Empirical Bioethics 11 (3):187-194.
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  • Defining Categories of Actionability for Secondary Findings in Next-Generation Sequencing.Celine Moret, Alex Mauron, Siv Fokstuen, Periklis Makrythanasis & Samia A. Hurst - 2017 - Journal of Medical Ethics 43 (5):346-349.
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  • Ethical Considerations for Choosing Between Possible Models for Using NIPD for Aneuploidy Detection.Zuzana Deans & Ainsley Janelle Newson - 2012 - Journal of Medical Ethics 38 (10):614-618.
    Recent scientific advances mean the widespread introduction of non-invasive prenatal diagnosis (NIPD) for chromosomal aneuploidies may be close at hand, raising the question of how NIPD should be introduced as part of antenatal care pathways for pregnant women. In this paper, the authors examine the ethical implications of three hypothetical models for using NIPD for aneuploidy in state-funded healthcare systems and assess which model is ethically preferable. In comparing the models, the authors consider their respective timings; how each model would (...)
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  • Should Non-Invasiveness Change Informed Consent Procedures for Prenatal Diagnosis?Zuzana Deans & Ainsley J. Newson - 2011 - Health Care Analysis 19 (2):122-132.
    Empirical evidence suggests that some health professionals believe consent procedures for the emerging technology of non-invasive prenatal diagnosis (NIPD) should become less rigorous than those currently used for invasive prenatal testing. In this paper, we consider the importance of informed consent and informed choice procedures for protecting autonomy in those prenatal tests which will give rise to a definitive result. We consider whether there is anything special about NIPD that could sanction a change to consent procedures for prenatal diagnosis or (...)
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  • Tragedy and Grenzsituationen in Genetic Prediction.Kjetil Rommetveit & Rouven Porz - 2009 - Medicine, Health Care and Philosophy 12 (1):9-16.
    Philosophical anthropologies that emphasise the role of the emotions can be used to expand existing notions of moral agency and learning in situations of great moral complexity. In this article we tell the story of one patient facing the tough decision of whether to be tested for Huntington’s disease or not. We then interpret her story from two different but compatible philosophical entry points: Aristotle’s conception of Greek tragedy and Karl Jaspers’ notion of Grenzsituationen (boundary situations). We continue by indicating (...)
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  • Why Non-Directiveness is Insufficient: Ethics of Genetic Decision Making and a Model of Agency. [REVIEW]Christoph Rehmann-Sutter - 2009 - Medicine Studies 1 (2):113-129.
    There is no consensus about the ethical ideal of genetic counselling and decision making. This paper reviews and discusses some of the most prominent ethical arguments that have been brought forward against the non-directiveness principle (NDP), which has been the ethical gold standard for a long time. These arguments can be classed in four categories: (i) NDP can be against the best interests of the individuals concerned; (ii) NDP has ideological elements that do not adequately represent the counselling ethos; (iii) (...)
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  • “Being Guided”: What Oncofertility Patients’ Decisions Can Teach Us About the Efficacy of Autonomy, Agency, and Decision- Making Theory in the Contemporary Clinical Encounter.Alexis Paton - 2019 - International Journal of Feminist Approaches to Bioethics 12 (2):18-35.
    Sociologists have long questioned the efficacy and accuracy of theories of autonomy, agency, and decision-making in the contemporary clinical encounter. Recent empirical research on decision-making in the clinic has shown a disconnection between what happens in theory and what happens in practice. In order to examine these theories in a particular context, the research reported here examines how the concepts of autonomy, agency, and decision-making are understood within the context of female patients making oncofertility decisions in the United Kingdom. This (...)
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  • How to Relate the Empirical to the Normative.Christoph Rehmann-Sutter, Rouven Porz & Jackie Leach Scully - 2012 - Cambridge Quarterly of Healthcare Ethics 21 (4):436-447.
  • Ethical Aspects of a Predictive Test for Huntington’s Disease.P. L. Andersson, A. Petersen, C. Graff & A. -K. Edberg - 2016 - Nursing Ethics 23 (5):565-575.