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  1. Consent to Epistemic Interventions: A Contribution to the Debate on the Right (Not) to Know.Niels Nijsingh - 2016 - Medicine, Health Care and Philosophy 19 (1):103-110.
    The debate on the ‘right to know’ has simmered on for over 30 years. New examples where a right to be informed is contrasted to a right to be kept in ignorance occasionally surface and spark disagreement on the extent to which patients and research subjects have a right to be self-determining concerning the health related information they receive. Up until now, however, this debate has been unsatisfactory with regard to the question what type of rights—if any—are in play here (...)
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  • Ignorance, Information and Autonomy.John Harris & Kirsty Keywood - 2001 - Theoretical Medicine and Bioethics 22 (5):415-436.
    People have a powerful interest in geneticprivacy and its associated claim to ignorance,and some equally powerful desires to beshielded from disturbing information are oftenvoiced. We argue, however, that there is nosuch thing as a right to remain in ignorance,where a right is understood as an entitlementthat trumps competing claims. This doesnot of course mean that information must alwaysbe forced upon unwilling recipients, only thatthere is no prima facie entitlement to beprotected from true or honest information aboutoneself. Any claims to be (...)
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  • The Right Not to Know and the Duty to Tell: The Case of Relatives.Niklas Juth - 2014 - Journal of Law, Medicine and Ethics 42 (1):38-52.
    Obtaining and sharing genetic information when there is a potential conflict of interest between patients and their relatives give rise to two questions. Do we have a duty to find out our genetic predispositions for disease for the sake of our relatives, or do we have a right to remain ignorant? Do we have a duty to disclose our known genetic predispositions for disease to our relatives? I argue that the answer to both questions is yes, but to a lesser (...)
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  • The Right Not to Know and the Duty to Tell: The Case of Relatives.Niklas Juth - 2014 - Journal of Law, Medicine and Ethics 42 (1):38-52.
    This text is about obtaining and sharing genetic information when there is a potential conflict of interests between patients and their families and relatives. The patient or, in this text, the “index-person,” is someone who is considering obtaining or already has obtained genetic information about herself through genetic testing.The index-person can have several reasons to take an interest in obtaining her genetic information. She may want to know if she has a genetic predisposition for a disorder in order to take (...)
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  • Right Not to Know or Duty to Know? Prenatal Screening for Polycystic Renal Disease.R. Kielstein & H. -M. Sass - 1992 - Journal of Medicine and Philosophy 17 (4):395-405.
    New dimensions in different ethical scenarios following genetic information require new medical-ethical Action Guides for physician-patient interaction. This paper discusses the ambiguity in moral choice between a “right not to know” and “a duty to know”, regarding parental decisionmaking pro or contra selective abortion following prenatal screening for autosomal dominant polycystic kidney disease (Potter III) and related public policy issues.
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  • Genetic Ignorance, Moral Obligations and Social Duties.Tuija Takala & Matti Häyry - 2000 - Journal of Medicine and Philosophy 25 (1):107 – 113.
    In a contribution to The Journal of Medicine and Philosophy , Professor Rosamond Rhodes argues that individuals sometimes have an obligation to know about their genetic disorders, because this is required by their status as autonomous persons. Her analysis, which is based on Kant's concept of autonomy and Aristotle's notion of friendship, is extended here to consequentialist concerns. These are of paramount importance if, as we believe and Professor Rhodes herself implies, the Kantian and Aristotelian doctrines can be helpful only (...)
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  • Genetic Links, Family Ties, and Social Bonds: Rights and Responsibilities in the Face of Genetic Knowledge.Rosamond Rhodes - 1998 - Journal of Medicine and Philosophy 23 (1):10 – 30.
    Currently, some of the most significant moral issues involving genetic links relate to genetic knowledge. In this paper, instead of looking at the frequently addressed issues of responsibilities professionals or institutions have to individuals, I take up the question of what responsibilities individuals have to one another with respect to genetic knowledge. I address the questions of whether individuals have a moral right to pursue their own goals without contributing to society's knowledge of population genetics, without adding to their family's (...)
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