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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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  • The Relative Importance of Undesirable Truths.Lisa Bortolotti - 2013 - Medicine, Health Care and Philosophy 16 (4):683-690.
    The right not to know is often defended on the basis of the principle of respect for personal autonomy. If I choose not to acquire personal information that impacts on my future prospects, such a choice should be respected, because I should be able to decide whether to access information about myself and how to use it. But, according to the incoherence objection to the right not to know in the context of genetic testing, the choice not to acquire genetic (...)
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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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  • 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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  • Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications.Graeme Laurie - 2014 - Journal of Law, Medicine and Ethics 42 (1):53-63.
    The right not to know is a contested matter. This can be because the inversion of the normal framing of entitlement to information about one's own health is thought to be illogical and inconsistent with self-authorship and/or because the very idea of claiming a right not to know information is an inappropriate appeal to the discourse of rights that places impossible responsibilities on others. Notwithstanding, there has been a sustained increase in this kind of appeal in recent years fueled in (...)
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  • Recognizing the Right Not to Know: Conceptual, Professional, and Legal Implications.Graeme Laurie - 2014 - Journal of Law, Medicine and Ethics 42 (1):53-63.
    This article argues for the importance of conceptual clarity in the debate about the so-called right not to know. This is vital both at the theoretical and the practical level. It is suggested that, unlike many formulations and attempts to give effect to this right, what is at stake is not merely an aspect of personal autonomy and therefore cannot and should not be reduced only to a question of individual choice. Rather, it is argued that the core interests that (...)
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  • From the Right to Know to the Right Not to Know.Bartha Maria Knoppers - 2014 - Journal of Law, Medicine and Ethics 42 (1):6-10.
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  • Freedom and a Right (Not) to Know.Juha Räikkä - 1998 - Bioethics 12 (1):49-63.
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  • To Know or Not to Know? Genetic Ignorance, Autonomy and Paternalism.Jane Wilson - 2005 - Bioethics 19 (5-6):492-504.
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  • The Right Not to Know: The Case of Psychiatric Disorders.Lisa Bortolotti & Heather Widdows - 2011 - Journal of Medical Ethics 37 (11):673-676.
    This paper will consider the right not to know in the context of psychiatric disorders. It will outline the arguments for and against acquiring knowledge about the results of genetic testing for conditions such as breast cancer and Huntington’s disease, and examine whether similar considerations apply to disclosing to clients the results of genetic testing for psychiatric disorders such as depression and Alzheimer’s disease. The right not to know will also be examined in the context of the diagnosis of psychiatric (...)
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  • The Right Not to Know: An Autonomy Based Approach.R. Andorno - 2004 - Journal of Medical Ethics 30 (5):435-439.
    The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient’s relatives who, (...)
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  • Can Broad Consent Be Informed Consent?M. Sheehan - 2011 - Public Health Ethics 4 (3):226-235.
    In biobanks, a broader model of consent is often used and justified by a range of different strategies that make reference to the potential benefits brought by the research it will facilitate combined with the low level of risk involved (provided adequate measures are in place to protect privacy and confidentiality) or a questioning of the centrality of the notion of informed consent. Against this, it has been suggested that the lack of specific information about particular uses of the samples (...)
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  • Genetic Privacy: Orthodoxy or Oxymoron?A. Sommerville & V. English - 1999 - Journal of Medical Ethics 25 (2):144-150.
    In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination and the rights of individuals. In the medical sphere, the recognition of patient "rights" has resulted in health professionals being given clear duties of candour and frankness. Dilemmas arise, however, when patients (...)
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  • The Right to Know and the Right Not to Know Revisited: Part One.Roger Brownsword & Jeff Wale - 2017 - Asian Bioethics Review 9 (1-2):3-18.
    Prompted by developments in human genetics, a recurrent bioethical question concerns a person’s ‘right to know’ and ‘right not to know’ about genetic information held that is intrinsically related to or linked to them. In this paper, we will revisit the claimed rights in relation to two particular test cases. One concerns the rights of the 500,000 participants in UK Biobank whose biosamples, already having been genotyped, will now be exome sequenced, and the other concerns the rights of pregnant women (...)
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  • What Should We Want to Know About Our Future? A Kantian View on Predictive Genetic Testing.Bert Heinrichs - 2005 - Medicine, Health Care and Philosophy 8 (1):29-37.
    Recent advances in genomic research have led to the development of new diagnostic tools, including tests which make it possible to predict the future occurrence of monogenetic diseases (e.g. Chorea Huntington) or to determine increased susceptibilities to the future development of more complex diseases (e.g. breast cancer). The use of such tests raises a number of ethical, legal and social issues which are usually discussed in terms of rights. However, in the context of predictive genetic tests a key question arises (...)
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  • A Right to Do Wrong.Jeremy Waldron - 1981 - Ethics 92 (1):21-39.
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  • The Relative Importance of Undesirable Truths.Lisa Bortolotti - 2012 - Medicine Healthcare and Philosophy (4):683-690.
    The right not to know is often defended on the basis of the principle of respect for personal autonomy. If I choose not to acquire personal information that impacts on my future prospects, such a choice should be respected, because I should be able to decide whether to access information about myself and how to use it. But, according to the incoherence objection to the right not to know in the context of genetic testing, the choice not to acquire genetic (...)
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  • Free Choice and Patient Best Interests.Emma Bullock - 2016 - Health Care Analysis 24 (4):374-392.
    In medical practice, the doctrine of informed consent is generally understood to have priority over the medical practitioner’s duty of care to her patient. A common consequentialist argument for the prioritisation of informed consent above the duty of care involves the claim that respect for a patient’s free choice is the best way of protecting that patient’s best interests; since the patient has a special expertise over her values and preferences regarding non-medical goods she is ideally placed to make a (...)
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  • Informed Consent: Patient's Right or Patient's Duty?Richard T. Hull - 1985 - Journal of Medicine and Philosophy 10 (2):183-198.
    The rule that a patient should give a free, fully-informed consent to any therapeutic intervention is traditionally thought to express merely a right of the patient against the physician, and a duty of the physician towards the patient. On this view, the patient may waive that right with impugnity, a fact sometimes expressed in the notion of a right not to know. This paper argues that the rule also expresses a duty of the patient towards the physician and a right (...)
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  • Is There a Duty to Share Genetic Information?S. Matthew Liao - 2009 - Journal of Medical Ethics 35 (5):306-309.
    A number of prominent bioethicists such as Mike Parker, Anneke Lucassen, and Bartha Maria Knoppers have called for the adoption of a system in which by default, genetic information is shared among family members. In this paper, I suggest that a main reason given in support of this call to share genetic information among family members is the idea that genetic information is essentially familial in nature. Upon examining this ‘familial nature of genetics’ argument, I show that most genetic information (...)
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  • Communicating Genetic Information in the Family: The Familial Relationship as the Forgotten Factor.R. Gilbar - 2007 - Journal of Medical Ethics 33 (7):390-393.
    Communicating genetic information to family members has been the subject of an extensive debate recently in bioethics and law. In this context, the extent of the relatives’ right to know and not to know is examined. The mainstream in the bioethical literature adopts a liberal perception of patient autonomy and offers a utilitarian mechanism for solving familial tensions over genetic information. This reflects a patient-centred approach in which disclosure without consent is justified only to prevent serious harm or death to (...)
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  • Mandatory Disclosure and Medical Paternalism.Emma Bullock - 2016 - Ethical Theory and Moral Practice 19 (2):409-424.
    Medical practitioners are duty-bound to tell their patients the truth about their medical conditions, along with the risks and benefits of proposed treatments. Some patients, however, would rather not receive medical information. A recent response to this tension has been to argue that that the disclosure of medical information is not optional. As such, patients do not have permission to refuse medical information. In this paper I argue that, depending on the context, the disclosure of medical information can undermine the (...)
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  • Rethinking the ‘Right Not to Know’.Rosalind McDougall - 2004 - Monash Bioethics Review 23 (1):22-36.
    The idea that an individual has a ‘right not to know’ genetic information about himself or herself is entrenched in both the policy sphere and the genetic counselling ethos. In this paper, I interrogate this idea of a ‘right not to know’, questioning particularly its status as a right. I identify the conception of rights that seems to underlie the posited ‘right not to know’ as a conception of rights in which they are prioritised non-outweighable interests. Turning to a series (...)
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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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  • 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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  • Genetic Moralism and Health.Tuija Takala - 2019 - Cambridge Quarterly of Healthcare Ethics 28 (2):225-235.
    :This article examines the moralistic language and arguments used in relation to genetics. The focus is on three practices: the claims that there is a duty to know about one’s own genetic makeup, assertions that genetic information should be used to inform reproductive decisions, and the proposition that there are moral reasons to participate in biobank research. With these three, the author contends that there are equally good, if not better, arguments to challenge them from a Millian perspective. Furthermore, especially (...)
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  • The Ethics of General Population Preventive Genomic Sequencing: Rights and Social Justice.Clair Morrissey & Rebecca L. Walker - 2018 - Journal of Medicine and Philosophy 43 (1):22-43.
    Advances in DNA sequencing technology open new possibilities for public health genomics, especially in the form of general population preventive genomic sequencing. Such screening programs would sit at the intersection of public health and preventive health care, and thereby at once invite and resist the use of clinical ethics and public health ethics frameworks. Despite their differences, these ethics frameworks traditionally share a central concern for individual rights. We examine two putative individual rights—the right not to know, and the child’s (...)
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  • Freedom and a Right to Know.Juha R.ÄikkÄ - 1998 - Bioethics 12 (1):49-63.
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  • Human Genetic Research: Emerging Trends in Ethics.Ruth Chadwick & Bartha Maria Knoppers - 2005 - .
    Genetic research has moved from Mendelian genetics to sequence maps to the study of natural human genetic variation at the level of the genome. This past decade of discovery has been accompanied by a shift in emphasis towards the ethical principles of reciprocity, mutuality, solidarity, citizenry and universality.
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  • Please Don’T Tell Me.Jonathan Herring & Charles Foster - 2012 - Cambridge Quarterly of Healthcare Ethics 21 (1):20-29.
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  • Please Don’T Tell Me.Jonathan Herring & Charles Foster - 2012 - Cambridge Quarterly of Healthcare Ethics 21 (1):20.
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  • Convention for Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Biomedicine: Convention on Human Rights and Biomedicine.Council of Europe - 1997 - Kennedy Institute of Ethics Journal 7 (3):277-290.
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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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  • Paternalism in the Name of Autonomy.Manne Sjöstrand, Stefan Eriksson, Niklas Juth & Gert Helgesson - 2013 - Journal of Medicine and Philosophy 38 (6):jht049.
    Different ideas of the normative relevance of autonomy can give rise to profoundly different action-guiding principles in healthcare. If autonomy is seen as a value rather than as a right, it can be argued that patients’ decisions should sometimes be overruled in order to protect or promote their own autonomy. We refer to this as paternalism in the name of autonomy. In this paper, we discuss different elements of autonomy (decision-making capacity, efficiency, and authenticity) and arguments in favor of paternalism (...)
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  • Scrutinizing the Right Not to Know.Benjamin E. Berkman, Sara Chandros Hull & Leslie G. Biesecker - 2015 - American Journal of Bioethics 15 (7):17-19.
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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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  • The 'Right' Not to Know.D. E. Ost - 1984 - Journal of Medicine and Philosophy 9 (3):301-312.
    There is a common view in medical ethics that the patient's right to be informed entails, as well, a correlative right not to be informed, i.e., to waive one's right to information. This paper argues, from a consideration of the concept of autonomy as the foundation for rights, that there can be no such ‘right’ to refuse relevant information, and that the claims for such a right are inconsistent with both deontological and utilitarian ethics. Further, the right to be informed (...)
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