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  1. ‘There is a lot of good in knowing, but there is also a lot of downs’: public views on ethical considerations in population genomic screening.Amelia K. Smit, Gillian Reyes-Marcelino, Louise Keogh, Anne E. Cust & Ainsley J. Newson - 2021 - Journal of Medical Ethics 47 (12):e28-e28.
    Publics are key stakeholders in population genomic screening and their perspectives on ethical considerations are relevant to programme design and policy making. Using semi-structured interviews, we explored social views and attitudes towards possible future provision of personalised genomic risk information to populations to inform prevention and/or early detection of relevant conditions. Participants were members of the public who had received information on their personal genomic risk of melanoma as part of a research project. The focus of the analysis presented here (...)
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  • The right not to know and the obligation to know.Ben Davies - 2020 - Journal of Medical Ethics 46 (5):300-303.
    There is significant controversy over whether patients have a ‘right not to know’ information relevant to their health. Some arguments for limiting such a right appeal to potential burdens on others that a patient’s avoidable ignorance might generate. This paper develops this argument by extending it to cases where refusal of relevant information may generate greater demands on a publicly funded healthcare system. In such cases, patients may have an ‘obligation to know’. However, we cannot infer from the fact that (...)
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  • The Ethics of Human Embryo Editing via CRISPR-Cas9 Technology: A Systematic Review of Ethical Arguments, Reasons, and Concerns.Lindsay Wiley, Mattison Cheek, Emily LaFar, Xiaolu Ma, Justin Sekowski, Nikki Tanguturi & Ana Iltis - forthcoming - HEC Forum:1-37.
    The possibility of editing the genomes of human embryos has generated significant discussion and interest as a matter of science and ethics. While it holds significant promise to prevent or treat disease, research on and potential clinical applications of human embryo editing also raise ethical, regulatory, and safety concerns. This systematic review included 223 publications to identify the ethical arguments, reasons, and concerns that have been offered for and against the editing of human embryos using CRISPR-Cas9 technology. We identified six (...)
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  • From a Right to a Preference: Rethinking the Right to Genomic Ignorance.Lisa Dive - 2021 - Journal of Medicine and Philosophy 46 (5):605-629.
    The “right not to know” has generated significant discussion, especially regarding genetic information. In this paper, I argue that this purported right is better understood as a preference and that treating it as a substantive right has led to confusion. To support this claim, I present three critiques of the way the right not to know has been characterized. First, I demonstrate that the many conceptualizations of this right have hampered debate. Second, I show that the way autonomy is conceptualized (...)
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  • The Right Not to Know: some Steps towards a Compromise.Ben Davies & Julian Savulescu - 2020 - Ethical Theory and Moral Practice 24 (1):137-150.
    There is an ongoing debate in medicine about whether patients have a ‘right not to know’ pertinent medical information, such as diagnoses of life-altering diseases. While this debate has employed various ethical concepts, probably the most widely-used by both defenders and detractors of the right is autonomy. Whereas defenders of the right not to know typically employ a ‘liberty’ conception of autonomy, according to which to be autonomous involves doing what one wants to do, opponents of the right not to (...)
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  • Bridging the Gap Between Theory and Practice: Philosophy Through a Wide-Angle Lens.Janet Malek - 2018 - Journal of Medicine and Philosophy 43 (1):1-7.
    Philosophers who specialize in bioethics face a distinctive set of challenges in our work: to bring the theoretical insights of philosophical work and methodology to practical dilemmas affecting a diverse group of stakeholders every day. This article describes some of the key contributions that philosophy can make to the field of bioethics. It also identifies some of the pitfalls that can undermine the value of a philosophical approach when used to analyze questions arising in the real world. Recognition of the (...)
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  • The fertility of moral ambiguity in precision medicine.Jeanette Bresson Ladegaard Knox & Mette Nordahl Svendsen - 2023 - Medicine, Health Care and Philosophy 26 (3):465-476.
    Although precision medicine cuts across a large spectrum of professions, interdisciplinary and cross-sectorial moral deliberation has yet to be widely enacted, let alone formalized in this field. In a recent research project on precision medicine, we designed a dialogical forum (i.e. ‘the Ethics Laboratory’) giving interdisciplinary and cross-sectorial stakeholders an opportunity to discuss their moral conundrums in concert. We organized and carried out four Ethics Laboratories. In this article, we use Simone de Beauvoir’s concept of moral ambiguity as a lens (...)
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