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  1. Ethical values supporting the disclosure of incidental and secondary findings in clinical genomic testing: a qualitative study.Marlies Saelaert, Heidi Mertes, Tania Moerenhout, Elfride De Baere & Ignaas Devisch - 2020 - BMC Medical Ethics 21 (1):1-12.
    Incidental findings and secondary findings, being results that are unrelated to the diagnostic question, are the subject of an important debate in the practice of clinical genomic medicine. Arguments for reporting these results or not doing so typically relate to the principles of autonomy, non-maleficence and beneficence. However, these principles frequently conflict and are insufficient by themselves to come to a conclusion. This study investigates empirically how ethical principles are considered when actually reporting IFs or SFs and how value conflicts (...)
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  • Obligations and preferences in knowing and not knowing: the importance of context.Lisa Dive & Ainsley Janelle Newson - 2020 - Journal of Medical Ethics 46 (5):306-307.
    In healthcare broadly, and especially in genetic medicine, there is an ongoing debate about whether patients have a right not to know information about their own health. The extensive literature on this topic is characterised by a range of different understandings of what it means to have a RNTK,1–9 and how this purported right relates to patient autonomy. Ben Davies considers whether obligations not to place avoidable burdens on a publicly funded healthcare system might form the basis for an obligation (...)
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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 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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