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The ethics of uncertainty for data subjects

In Peter Dabrock, Matthias Braun & Patrik Hummel (eds.), The Ethics of Medical Data Donation. Springer Verlag. pp. 55-74 (2019)

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  1. Hyperphänomene: Modi hyperbolischer Erfahrung.Bernhard Waldenfels - 2012 - Berlin: Suhrkamp.
  • Die Stufen des Organischen und der Mensch.[author unknown] - 1928 - Annalen der Philosophie Und Philosophischen Kritik 7:36-36.
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  • The weirdest people in the world?Joseph Henrich, Steven J. Heine & Ara Norenzayan - 2010 - Behavioral and Brain Sciences 33 (2-3):61-83.
    Behavioral scientists routinely publish broad claims about human psychology and behavior in the world's top journals based on samples drawn entirely from Western, Educated, Industrialized, Rich, and Democratic (WEIRD) societies. Researchers – often implicitly – assume that either there is little variation across human populations, or that these “standard subjects” are as representative of the species as any other population. Are these assumptions justified? Here, our review of the comparative database from across the behavioral sciences suggests both that there is (...)
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  • Risk, Uncertainty and Profit.Frank H. Knight - 1921 - University of Chicago Press.
    Role of the entrepreneur in a distinct role of profit.
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  • Man and the state.Jacques Maritain - 1951 - Washington, D.C.: Catholic University of America Press.
    A reprint of Maritain's classic reflection on social and political issues.
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  • Notes Toward a Performative Theory of Assembly.Judith Butler - 2015 - Harvard University Press.
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  • The philosophy of information quality.Luciano Floridi & Phyllis Illari (eds.) - 2014 - Cham: Springer International Publishing.
    This work fulfills the need for a conceptual and technical framework to improve understanding of Information Quality (IQ) and Information Quality standards. The meaning and practical implementation of IQ are addressed, as it is relevant to any field where there is a need to handle data and issues such as accessibility, accuracy, completeness, currency, integrity, reliability, timeliness, usability, the role of metrics and so forth are all a part of Information Quality. -/- In order to support the cross-fertilization of theory (...)
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  • Living with Uncertainty: The Moral Significance of Ignorance * By MICHAEL J. ZIMMERMAN. [REVIEW]Michael Zimmerman - 2009 - Analysis 69 (4):785-787.
    Michael J. Zimmerman offers a conceptual analysis of the moral ‘ought’ that focuses on moral decision-making under uncertainty. His central case, originally presented by Frank Jackson, concerns a doctor who must choose among three treatments for a minor ailment. Her evidence suggests that drug B will partially cure her patient, that one of either drug A or C would cure him completely, but that the other drug would kill him. Accepting the intuition that the doctor ought to choose drug B, (...)
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  • Sound Trust and the Ethics of Telecare.Sander A. Voerman & Philip J. Nickel - 2017 - Journal of Medicine and Philosophy 42 (1):33-49.
    The adoption of web-based telecare services has raised multifarious ethical concerns, but a traditional principle-based approach provides limited insight into how these concerns might be addressed and what, if anything, makes them problematic. We take an alternative approach, diagnosing some of the main concerns as arising from a core phenomenon of shifting trust relations that come about when the physician plays a less central role in the delivery of care, and new actors and entities are introduced. Correspondingly, we propose an (...)
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  • Health Research with Big Data: Time for Systemic Oversight.Effy Vayena & Alessandro Blasimme - 2018 - Journal of Law, Medicine and Ethics 46 (1):119-129.
    To address the ethical challenges in big data health research we propose the concept of systemic oversight. This approach is based on six defining features and aims at creating a common ground across the oversight pipeline of biomedical big data research. Current trends towards enhancing granularity of informed consent and specifying legal provisions to address informational privacy and discrimination concerns in data-driven health research are laudable. However, these solutions alone cannot have the desired impact unless oversight activities by different stakeholders (...)
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  • “We the Scientists”: a Human Right to Citizen Science.Effy Vayena & John Tasioulas - 2015 - Philosophy and Technology 28 (3):479-485.
    The flourishing of citizen science is an exciting phenomenon with the potential to contribute significantly to scientific progress. However, we lack a framework for addressing in a principled and effective manner the pressing ethical questions it raises. We argue that at the core of any such framework must be the human right to science. Moreover, we stress an almost entirely neglected dimension of this right—the entitlement it confers on all human beings to participate in the scientific process in all of (...)
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  • Data Philanthropy and Individual Rights.Mariarosaria Taddeo - 2017 - Minds and Machines 27 (1):1-5.
  • The Most Good You Can Do: How Effective Altruism is Changing Ideas About Living Ethically.Peter Singer - 2015 - London: Yale University Press.
    From the ethicist the_ New Yorker_ calls “the most influential living philosopher,” a new way of thinking about living ethically.
  • A “We” Problem for Bioethics and the Social Sciences: A Response to Barbara Prainsack.Bob Simpson - 2018 - Science, Technology, and Human Values 43 (1):45-55.
    In her article “The ‘We’ in the Me: Solidarity in the Era of Personalized Medicine,” Barbara Prainsack develops an earlier interest in the relationship between solidarity and autonomy and the way that these notions operate once passed through the lens of bioethical thought and practice. In his response to this article, Simpson introduces the perspective of two South Asian physicians on these issues. The piece highlights issues of personhood upon which the informed consent transaction is based and draws attention to (...)
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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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  • Self-Tracking for Health and the Quantified Self: Re-Articulating Autonomy, Solidarity, and Authenticity in an Age of Personalized Healthcare.Tamar Sharon - 2017 - Philosophy and Technology 30 (1):93-121.
    Self-tracking devices point to a future in which individuals will be more involved in the management of their health and will generate data that will benefit clinical decision making and research. They have thus attracted enthusiasm from medical and public health professionals as key players in the move toward participatory and personalized healthcare. Critics, however, have begun to articulate a number of broader societal and ethical concerns regarding self-tracking, foregrounding their disciplining, and disempowering effects. This paper has two aims: first, (...)
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  • Ethical sharing of health data in online platforms- which values should be considered?Brígida Riso, Aaro Tupasela, Danya F. Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana C. H. Kongsholm, Silvia Zullo & Vojin Rakic - 2017 - Life Sciences, Society and Policy 13 (1):1-27.
    Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes. With this in mind, the Science and Values Working Group of the COST Action CHIP ME ‘Citizen's Health through (...)
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  • Whether and Where to Give.Theron Pummer - 2016 - Philosophy and Public Affairs 44 (1):77-95.
    Effective altruists recommend that we give large sums to charity, but by far their more central message is that we give effectively, i.e., to whatever charities would do the most good per dollar donated. In this paper, I’ll assume that it’s not wrong not to give bigger, but will explore to what extent it may well nonetheless be wrong not to give better. The main claim I’ll argue for here is that in many cases it would be wrong of you (...)
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  • The “We” in the “Me”: Solidarity and Health Care in the Era of Personalized Medicine.Barbara Prainsack - 2018 - Science, Technology, and Human Values 43 (1):21-44.
    This article challenges a key tacit assumption underpinning legal and ethical instruments in health care, namely, that people are ideally bounded, independent, and often also strategically rational individuals. Such an understanding of personhood has been criticized within feminist and other critical scholarship as being unfit to capture the deeply relational nature of human beings. In the field of medicine, however, it also causes tangible problems. I propose that a solidarity-based perspective entails a relational approach and as such helps to formulate (...)
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  • Thinking ethical and regulatory frameworks in medicine from the perspective of solidarity on both sides of the Atlantic.Barbara Prainsack & Alena Buyx - 2016 - Theoretical Medicine and Bioethics 37 (6):489-501.
    This article provides a concise overview of the history of scholarship on solidarity in Europe and North America. While recent decades have seen an increase in conceptual and scholarly interest in solidarity in North America and other parts of the Anglo-Saxon world, the concept is much more strongly anchored in Europe. Continental European politics in particular have given rise to two of the most influential traditions of solidarity, namely, socialism and Christian ethics. Solidarity has also guided important public instruments and (...)
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  • Data Sharing and the Idea of Ownership.Jonathan Montgomery - 2017 - The New Bioethics 23 (1):81-86.
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  • The ethics of big data: current and foreseeable issues in biomedical contexts.Brent Daniel Mittelstadt & Luciano Floridi - 2016 - Science and Engineering Ethics 22 (2):303–341.
    The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of the ethical implications (...)
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  • Solidarity in Biomedicine and Beyond.Barbara Prainsack & Alena Buyx - 2016 - Cambridge University Press.
    In times of global economic and political crises, the notion of solidarity is gaining new currency. This book argues that a solidarity-based perspective can help us to find new ways to address pressing problems. Exemplified by three case studies from the field of biomedicine: databases for health and disease research, personalised healthcare, and organ donation, it explores how solidarity can make a difference in how we frame problems, and in the policy solutions that we can offer.
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  • Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self.Catriona Mackenzie & Natalie Stoljar (eds.) - 2000 - New York: Oxford University Press.
    This collection of original essays explores the social and relational dimensions of individual autonomy. Rejecting the feminist charge that autonomy is inherently masculinist, the contributors draw on feminist critiques of autonomy to challenge and enrich contemporary philosophical debates about agency, identity, and moral responsibility. The essays analyze the complex ways in which oppression can impair an agent's capacity for autonomy, and investigate connections, neglected by standard accounts, between autonomy and other aspects of the agent, including self-conception, self-worth, memory, and the (...)
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  • Moral uncertainty and its consequences.Ted Lockhart - 2000 - New York: Oxford University Press.
    We are often uncertain how to behave morally in complex situations. In this controversial study, Ted Lockhart contends that moral philosophy has failed to address how we make such moral decisions. Adapting decision theory to the task of decision-making under moral uncertainly, he proposes that we should not always act how we feel we ought to act, and that sometimes we should act against what we feel to be morally right. Lockhart also discusses abortion extensively and proposes new ways to (...)
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  • Ethics and Epistemology in Big Data Research.Wendy Lipworth, Paul H. Mason, Ian Kerridge & John P. A. Ioannidis - 2017 - Journal of Bioethical Inquiry 14 (4):489-500.
    Biomedical innovation and translation are increasingly emphasizing research using “big data.” The hope is that big data methods will both speed up research and make its results more applicable to “real-world” patients and health services. While big data research has been embraced by scientists, politicians, industry, and the public, numerous ethical, organizational, and technical/methodological concerns have also been raised. With respect to technical and methodological concerns, there is a view that these will be resolved through sophisticated information technologies, predictive algorithms, (...)
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  • In dubious battle: uncertainty and the ethics of killing.Seth Lazar - 2018 - Philosophical Studies 175 (4):859-883.
    How should deontologists concerned with the ethics of killing apply their moral theory when we don’t know all the facts relevant to the permissibility of our action? Though the stakes couldn’t be higher, and uncertainty is endemic where killing is concerned, few deontologists have an answer to this question. In this paper I canvass two possibilities: that we should apply a threshold standard, equivalent to the ‘beyond a reasonable doubt’ standard applied for criminal punishment; and that we should fit our (...)
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  • Enabling posthumous medical data donation: an appeal for the ethical utilisation of personal health data.Jenny Krutzinna, Mariarosaria Taddeo & Luciano Floridi - 2019 - Science and Engineering Ethics 25 (5):1357-1387.
    This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster posthumous medical data donation. (...)
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  • Posthumous Interests: Legal and Ethical Perspectives.Daniel Sperling - 2008 - Cambridge University Press.
    Daniel Sperling discusses the legal status of posthumous interests and their possible defeat by actions performed following the death of a person. The author first explores the following questions: Do the dead have interests and/or rights, the defeat of which may constitute harm? What does posthumous harm consist of and when does it occur, if at all? This is followed by a more detailed analysis of three categories of posthumous interests arising in the medico-legal context: the proprietary interest in the (...)
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  • Scientific research is a moral duty.J. Harris - 2005 - Journal of Medical Ethics 31 (4):242-248.
    Biomedical research is so important that there is a positive moral obligation to pursue it and to participate in itScience is under attack. In Europe, America, and Australasia in particular, scientists are objects of suspicion and are on the defensive.i“Frankenstein science”5–8 is a phrase never far from the lips of those who take exception to some aspect of science or indeed some supposed abuse by scientists. We should not, however, forget the powerful obligation there is to undertake, support, and participate (...)
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  • Deciding to trust, coming to believe.Richard Holton - 1994 - Australasian Journal of Philosophy 72 (1):63 – 76.
    Can we decide to trust? Sometimes, yes. And when we do, we need not believe that our trust will be vindicated. This paper is motivated by the need to incorporate these facts into an account of trust. Trust involves reliance; and in addition it requires the taking of a reactive attitude to that reliance. I explain how the states involved here differ from belief. And I explore the limits of our ability to trust. I then turn to the idea of (...)
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  • The political economy of death in the age of information: a critical approach to the digital afterlife industry.Carl Öhman & Luciano Floridi - 2017 - Minds and Machines 27 (4):639-662.
    Online technologies enable vast amounts of data to outlive their producers online, thereby giving rise to a new, digital form of afterlife presence. Although researchers have begun investigating the nature of such presence, academic literature has until now failed to acknowledge the role of commercial interests in shaping it. The goal of this paper is to analyse what those interests are and what ethical consequences they may have. This goal is pursued in three steps. First, we introduce the concept of (...)
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  • Being Helped and Being Grateful: Imperfect Duties, the Ethics of Possession, and the Unity of Morality.Barbara Herman - 2012 - Journal of Philosophy 109 (5-6):391-411.
  • Trustworthy groups and organisations.Katherine Jane Hawley - 2017 - In P. Faulkner & T. Simpson (eds.), The Philosophy of Trust. Oxford, U.K.: Oxford University Press.
    Beyond philosophy, discussions of trust and trustworthiness often concern collective entities such as corporations, states, and social groups. But much philosophical work takes trust in an individual person as paradigmatic, distinguishing such trust from mere reliance. This chapter explores the distinction between trustworthiness and mere reliability as it applies to collectives, arguing that the distinction does not have the same significance as it has in the individual case.
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  • Distributed morality in an information society.Luciano Floridi - 2013 - Science and Engineering Ethics 19 (3):727-743.
    The phenomenon of distributed knowledge is well-known in epistemic logic. In this paper, a similar phenomenon in ethics, somewhat neglected so far, is investigated, namely distributed morality. The article explains the nature of distributed morality, as a feature of moral agency, and explores the implications of its occurrence in advanced information societies. In the course of the analysis, the concept of infraethics is introduced, in order to refer to the ensemble of moral enablers, which, although morally neutral per se, can (...)
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  • Epistemic Value Theory and Social Epistemology.Don Fallis - 2006 - Episteme 2 (3):177-188.
    In order to guide the decisions of real people who want to bring about good epistemic outcomes for themselves and others, we need to understand our epistemic values. In Knowledge in a Social World, Alvin Goldman has proposed an epistemic value theory that allows us to say whether one outcome is epistemically better than another. However, it has been suggested that Goldman's theory is not really an epistemic value theory at all because whether one outcome is epistemically better than another (...)
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  • Recommendation Rec(2006)4 of the Committee of Ministers to Member States on Research on Biological Materials of Human Origin. [REVIEW]Council of Europe & Committee of Ministers - 2006 - Jahrbuch für Wissenschaft Und Ethik 11 (1):387-394.
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  • Biobanking and the Abandonment of Informed Consent: An Ethical Imperative.Stephanie Solomon Cargill - 2016 - Public Health Ethics 9 (3):255-263.
    There has been extensive discussion in research ethics literature surrounding the appropriate form of informed consent for biobanking, whether with adapted content, or adapted forms such as broad or tiered consent. These discussions presuppose that it is possible to disclose adequate information at the outset to facilitate an informed choice to donate to a biobank. I will argue that informed consent cannot be achieved because in the biobanking context, we are either consenting to an enterprise that is not research or (...)
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  • The Public Interest, Public Goods, and Third-Party Access to UK Biobank.B. Capps - 2012 - Public Health Ethics 5 (3):240-251.
    In 2007, the Ethics and Governance Council of the UK Biobank commissioned a Report on ‘Concepts of Public Good and Pubic Interest in Access Policies’. This study considered the Biobank’s role as a ‘public good’ in respect to supporting and promoting health throughout society. However, the conditions under which access by third parties to UK Biobank are justified in the public interest have not been well considered. In this article, I propose to analyse the conditions that should allow such access. (...)
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  • How the machine ‘thinks’: Understanding opacity in machine learning algorithms.Jenna Burrell - 2016 - Big Data and Society 3 (1):205395171562251.
    This article considers the issue of opacity as a problem for socially consequential mechanisms of classification and ranking, such as spam filters, credit card fraud detection, search engines, news trends, market segmentation and advertising, insurance or loan qualification, and credit scoring. These mechanisms of classification all frequently rely on computational algorithms, and in many cases on machine learning algorithms to do this work. In this article, I draw a distinction between three forms of opacity: opacity as intentional corporate or state (...)
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  • Post-mortem privacy and informational self-determination.J. C. Buitelaar - 2017 - Ethics and Information Technology 19 (2):129-142.
    Post-mortem privacy is becoming a vital topic of public and scholarly legal concern. Post-mortem privacy is understood as the right of a person to preserve and control what becomes of his reputation and dignity after death. The assumption that the deceased does not qualify for privacy rights, because his bodily presence has been terminated, no longer holds in our networked society. In the digital age, the phenomenon of the digital legacy that an Internet user leaves behind after his demise, has (...)
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  • A relational account of public health ethics.Françoise Baylis, Nuala P. Kenny & Susan Sherwin - 2008 - Public Health Ethics 1 (3):196-209.
    oise Baylis, 1234 Le Marchant Street, Halifax, Nova Scotia, Canada B3H 3P7. Tel.: (902)-494–2873; Fax: (902)-494-2924; Email: francoise.baylis{at}dal.ca ' + u + '@' + d + ' '//--> . Abstract Recently, there has been a growing interest in public health and public health ethics. Much of this interest has been tied to efforts to draw up national and international plans to deal with a global pandemic. It is common for these plans to state the importance of drawing upon a well-developed (...)
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  • Moral uncertainty and permissibility: Evaluating Option Sets.Christian Barry & Patrick Tomlin - 2016 - Canadian Journal of Philosophy 46 (6):1-26.
    In this essay, we explore an issue of moral uncertainty: what we are permitted to do when we are unsure about which moral principles are correct. We develop a novel approach to this issue that incorporates important insights from previous work on moral uncertainty, while avoiding some of the difficulties that beset existing alternative approaches. Our approach is based on evaluating and choosing between option sets rather than particular conduct options. We show how our approach is particularly well-suited to address (...)
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  • Trust and antitrust.Annette Baier - 1986 - Ethics 96 (2):231-260.
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  • Proxy consent: moral authority misconceived.A. Wrigley - 2007 - Journal of Medical Ethics 33 (9):527-531.
    The Mental Capacity Act 2005 has provided unified scope in the British medical system for proxy consent with regard to medical decisions, in the form of a lasting power of attorney. While the intentions are to increase the autonomous decision making powers of those unable to consent, the author of this paper argues that the whole notion of proxy consent collapses into a paternalistic judgement regarding the other person’s best interests and that the new legislation introduces only an advisor, not (...)
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  • Directed organ donation: is the donor the owner?A. J. Cronin & D. Price - 2008 - Clinical Ethics 3 (3):127-131.
    The issue of directed donation of organs from deceased donors for transplantation has recently risen to the fore, given greater significance by the relatively stagnant rate of deceased donor donation in the UK. Although its status and legitimacy is explicitly recognized across the USA, elsewhere a more cautious, if not entirely negative, stance has been taken. In England, Wales and Northern Ireland, the Human Tissue Act 2004, and in Scotland the Human Tissue (Scotland) Act 2006, are both silent in this (...)
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  • Philosophical Papers: Volume 2, Philosophy and the Human Sciences.Charles Taylor - 1985 - New York: Cambridge University Press.
    Charles Taylor has been one of the most original and influential figures in contemporary philosophy: his 'philosophical anthropology' spans an unusually wide range of theoretical interests and draws creatively on both Anglo-American and Continental traditions in philosophy. A selection of his published papers is presented here in two volumes, structured to indicate the direction and essential unity of the work. He starts from a polemical concern with behaviourism and other reductionist theories which aim to model the study of man on (...)
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  • Principles of biomedical ethics.Tom L. Beauchamp - 1979 - New York: Oxford University Press. Edited by James F. Childress.
    Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...)
  • Epistemic Justification.Ernest Sosa - 2003 - Wiley.
     
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  • The Courage to Fail: A Social View of Organ Transplants and Dialysis.Renée Claire Fox & Judith P. Swazey - 1978
    Written by a sociologist and a biologist and science historian, this text considers the social aspects of organ transplantation and chronic hemodialysis. Their research, begun in 1968, focused on the experience of research physicians engaged in this work, the "gift- exchange" social dimensions of these practices, and the impact of these technologies on society as a whole. This reprint of the 1978 edition includes a new introduction by the authors. c. Book News Inc.
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