Raimo Tuomela’s we-mode groups are partly characterized by norms. Some norms may be characteristic of all we-mode groups like the norm restricting a member’s right to leave the group. Some think that this aspect of Tuomela’s theory has implausible ethical implications concerning the rights and autonomy of members in we-mode groups. That worry vanishes, I argue, on a plausible interpretation of Tuomela’s notion of social normativity and a reasonable precisification of the notion of autonomy in this context. On the (...) other hand, Tuomela’s general silence on the nature of moral normativity makes it unclear how his distinction between social and moral normativity should be drawn more precisely. Is this a difference in kind, or merely a difference in the scope or social basis of the norms in question? I find this worth exploring with the aid of resources available within a broadly Tuomelian framework. Like Jeremy Koons (2019), I believe that Tuomela’s framework could be used to refine Wilfrid Sellars theory of ethical judgments as expressions of we-intentions. My preferred interpretation of Tuomela differs from Koons’ though, and so does the resulting reconstruction of Sellars, which is more Humean than Kantian. (shrink)

Science is a force for good in the world--at least usually. But sometimes, when obsession gets the better of scientists, they twist a noble pursuit into something sinister. Under this spell, knowledge isn't everything, it's the only thing--no matter the cost. Bestselling author Sam Kean tells the true story of what happens when unfettered ambition pushes otherwise rational men and women to cross the line in the name of science, trampling ethical boundaries and often committing crimes in the process. (...) The Icepick Surgeon masterfully guides the reader across two thousand years of history, beginning with Cleopatra's dark deeds in ancient Egypt. The book reveals the origins of much of modern science in the transatlantic slave trade of the 1700s, as well as Thomas Edison's mercenary support of the electric chair and the warped logic of the spies who infiltrated the Manhattan Project. But the sins of science aren't all safely buried in the past. Many of them, Kean reminds us, still affect us today. We can draw direct lines from the medical abuses of Tuskegee and Nazi Germany to current vaccine hesitancy, and connect icepick lobotomies from the 1950s to the contemporary failings of mental-health care. Kean even takes us into the future, when advanced computers and genetic engineering could unleash whole new sways to do one another wrong. Unflinching, and exhilarating to the last page, The Icepick Surgeon fuses the drama of scientific discovery with the illicit thrill of a true-crime tale. With his trademark wit and precision, Kean shows that, while science has done more good than harm in the world, rogue scientists do exist, and when we sacrifice morals for progress, we often end up with neither. (shrink)

Volume 23, Issue 3-4, November - December 2024, Page 251-263.

This book contains the results of two European/American preparatory workshops for the First World Conference on Ethics Codes in Medicine and Biotechnology (October 1997, Freiburg, Germany) supported by the leading national institutions in the field. It aims to stimulate research about codes, the effects of codification and other forms of implementing ethics. It breaks new ground with interdisciplinary and international discourse on the subject, emphasising the need for a complete collection of codes for systematic research and evaluation and filling (...) the gap in literature on the subject to date. (shrink)

Volume 23, Issue 3-4, November - December 2024, Page 245-250.

La médecine personnalisée devrait être renommée "médecine des données". Les finalités de cette médecine sont, à partir d'une quantité importante de données, de déduire ou d'induire différentes informations valorisables à la fois au niveau du soin, de la recherche et de l'industrie. Pour cela, un réseau d'échange ou de partage d'échantillons biologiques, de données génétiques et d'informations entre patients, cliniciens, chercheurs et industriels est développé, grâce à des voies de communication dématérialisées. Ce réseau permet de centraliser le stockage, et une (...) partie du traitement et de l'analyse, au niveau de centres de soin et de recherche académiques et/ou de "plateformes bifaces". Les enjeux éthiques majeurs de cette médecine résident alors dans les moyens et les modalités d'accès, de stockage et d'usage des données génétiques et requièrent des solutions. L'intérêt de cette thèse de doctorat est donc de proposer à la fois une nouvelle méthode de recherche en bioéthique permettant de mieux étudier de tels phénomènes sociaux complexes et une solution possible aux enjeux éthiques identifiés grâce à cette méthode. Il s'agit, respectivement, de la modélisation théorique systémique inductive qualitative et du consentement éclairé exprès dynamique électronique. (shrink)

Do doctors fix patients? Or do they heal them? For all of modern medicine’s many successes, discontent with the quality of patient care has combined with a host of new developments, from aging populations to the resurgence of infectious diseases, which challenge medicine’s overreliance on narrowly mechanistic and technical methods of explanation and intervention, or “fixing’ patients. The need for a better balance, for more humane “healing” rationales and practices that attend to the social and environmental aspects of (...) health and illness and the experiencing person, is more urgent than ever. Yet, in public health and bioethics, the fields best positioned to offer countervailing values and orientations, the dominant approaches largely extend and reinforce the reductionism and individualism of biomedicine. The collected essays in To Fix or To Heal do more than document the persistence of reductionist approaches and the attendant extension of medicalization to more and more aspects of our lives. The contributors also shed valuable light on why reductionism has persisted and why more holistic models, incorporating social and environmental factors, have gained so little traction. The contributors examine the moral appeal of reductionism, the larger rationalist dream of technological mastery, the growing valuation of health, and the enshrining of individual responsibility as the seemingly non-coercive means of intervention and control. This paradigm-challenging volume advances new lines of criticism of our dominant medical regime, even while proposing ways of bringing medical practice, bioethics, and public health more closely into line with their original goals. Precisely because of the centrality of the biomedical approach to our society, the contributors argue, challenging the reductionist model and its ever-widening effects is perhaps the best way to press for a much-needed renewal of our ethical and political discourse. (shrink)

All investigators funded by the National Institutes of Health are now required to receive training about the ethics of clinical research. Based on a course taught by the editors at NIH, Ethical and Regulatory Aspects of Clinical Research is the first book designed to help investigators meet this new requirement. The book begins with the history of human subjects research and guidelines instituted since World War II. It then covers various stages and components of the clinical trial process: designing (...) the trial, recruiting participants, ensuring informed consent, studying special populations, and conducting international research. Concluding chapters address conflicts of interest, scientific misconduct, and challenges to the IRB system. The appendix provides sample informed consent forms. This book will be used in undergraduate courses on research ethics and in schools of medicine and public health by students who are or will be carrying out clinical research. Professionals in need of such training and bioethicists also will be interested. (shrink)

Designer babies: choosing our children -- Haven't I seen you before? -- Exchange parts for everybody -- How to improve yourself -- Who wants to live forever? -- Big brother is watching your genome -- Something on your mind? -- Playing God -- Trust me, I'm a scientist!

BackgroundDuring a commercial surrogacy arrangement, the event of embryo transfer can be seen as the formal starting point of the arrangement. However, it is common for surrogates to undergo a failed attempt at pregnancy conception or missed conception after an embryo transfer. This paper attempts to argue that such failed attempts can be understood as a loss. It aims to reconstruct the experiences of loss and grief of the surrogates and the intended parents as a consequence of their collective failure (...) to conceive a surrogate pregnancy.MethodsDrawing on a qualitative study conducted over a period of eight months between 2014 and 2015 at two fertility clinics in Delhi and two in Kolkata, India, this paper examines the experiences of the surrogates and the intended parents when faced with missed conceptions or failed conceptions during a surrogacy arrangement.ResultsWe argue that while the surrogate grieves the non-arrival of a ‘good news’ as an uncertain loss, the intended parents experience yet another, failure in addition to the losses they might have incurred during their previous fertility treatments. The body of the surrogate becomes a site of ‘a lost opportunity’. The surrogate embodies a loss in her quest to achieve social mobility and the intended parents experience a disembodied pregnancy loss. This very emotional experience stands in stark contrast to the conceptualisation of such failed attempts as non-events within the discourse of the surrogacy industry. The experience of loss of the intended parents is recognised but their grief is given no space. We argue that such ambiguity around the nature of losses resulting out of a missed or failed conception during surrogacy is an outcome of lack of interpersonal relationship between the surrogate and the intended parents.ConclusionsSince commercial surrogacy is a relational process, the only way in which the experiences of losses and failures of the actors at the preconception stage can be better addressed is through developing close sharing and understanding between each other through an ethics of care. Therefore, to nurture caring relationships, surrogacy needs to be understood as a moral commitment by –the surrogates and intended parents. To enable such a commitment, there is a need to reconsider the pre-defined and legally regulated professional duty of the doctors, agents and agencies. It cannot be a one-sided commitment, but has to have elements of mutuality. (shrink)

In Science and Ethics, Bernard Rollin examines the ideology that denies the relevance of ethics to science. Providing an introduction to basic ethical concepts, he discusses a variety of ethical issues that are relevant to science and how they are ignored, to the detriment of both science and society. These include research on human subjects, animal research, genetic engineering, biotechnology, cloning, xenotransplantation, and stem cell research. Rollin also explores the ideological agnosticism that scientists have displayed regarding subjective experience (...) in humans and animals, and its pernicious effect on pain management. Finally, he articulates the implications of the ideological denial of ethics for the practice of science itself in terms of fraud, plagiarism, and data falsification. In engaging prose and with philosophical sophistication, Rollin cogently argues in favor of making education in ethics part and parcel of scientific training. (shrink)

Faced with the exponential development of Big Data and both its legal and economic repercussions, we are still slightly in the dark concerning the use of digital information. In the perpetual balance between confidentiality and transparency, this data will lead us to call into question how we understand certain paradigms, such as the Hippocratic Oath in medicine. As a consequence, a reflection on the study of the risks associated with the ethical issues surrounding the design and manipulation of (...) this "massive data" seems to be essential. This book provides a direction and ethical value to these significant volumes of data. It proposes an ethical analysis model and recommendations to better keep this data in check. This empirical and ethico-technical approach brings together the first aspects of a moral framework directed toward thought, conscience and the responsibility of citizens concerned by the use of data of a personal nature. Defines Big Data applications in health Presents the ethical value of the medical datasphere via the description of a model of an ethical analysis of Big Data Provides the recommendations and steps necessary for successful management and governance of personal health data Helps readers determine what conditions are essential for the development of the study of Big Data. (shrink)

This guide accompanies the following article: Matthew Kieran, ‘Art, Morality and Ethics: On the (Im)moral Character of Art Works and Inter‐Relations to Artistic Value’. Philosophy Compass 1/2 (2006): pp. 129–143, doi: 10.1111/j.1747‐9991.2006.00019.x Author’s Introduction Up until fairly recently it was philosophical orthodoxy – at least within analytic aesthetics broadly construed – to hold that the appreciation and evaluation of works as art and moral considerations pertaining to them are conceptually distinct. However, following on from the idea that artistic (...) value is broader than aesthetic value, the last 15 years has seen an explosion of interest in exploring possible inter‐relations between the appreciative and ethical character of works as art. Consideration of these issues has a distinguished philosophical history but as the Compass survey article suggests (‘Art, Morality and Ethics: On the (Im)Moral Character of Art Works and Inter‐Relations to Artistic Value.’Philosophy Compass 1.2 (2006): 129–43), it is only very recently that figures in the field have returned to it to develop more precisely what they take the relationships to be and why. Consensus is, unsurprisingly, lacking. The reinvigoration of the issues has led sophisticated formalists or autonomists to mount a more considered defence of the idea that aesthetic and literary values are indeed conceptually distinct from the justification or otherwise of the moral perspective or views endorsed in a work (Topic I). The challenges presented by such a defence are many but amongst them are appeals to critical practice (Lamarque and Olsen), scepticism about whether or not art really can give us bona fide knowledge (Stolnitz) and the recognition that truth often seems to be far removed from what it is we value in our appreciation of works (Lamarque). One way to motivate consideration of the relevance of a work’s moral character to its artistic value concerns the phenomena of imaginative resistance. At least sometimes it would seem that, as Hume originally suggested, we either cannot or will not enter imaginatively into the perspective solicited by a work due to its morally problematic character (Topic II). In some cases, it would seem that as a matter of psychological fact, we cannot do so since it is impossible for us to imagine how it could be that a certain attitude or action is morally permissible or good (Walton). The question then is whether or not this is a function of morality in particular or constraints on imaginative possibility more generally and what else is involved. At other times, the phenomena seem to be driven by a moral reluctance to allow ourselves to enter into the dramatic perspective involved (Moran) or evaluation of the attitude expressed (Stokes). Nonetheless, it is far from obvious that this is so of all the attitudes or responses we judge to be morally problematic. After all, it looks like we can and indeed often do suspend or background particular cognitive and moral commitments in engaging with all sorts of works (Nichols and Weinberg). If the moral character of a work interacts with how we appreciate and evaluate them, then the pressing question is this: is there any systematic account of the relationship available to us? One way is to consider the relationship between our emotional responses to works and their moral character (Topic III). After all, art works often solicit various emotional responses from us to follow the work and make use of moral concepts in so doing (Carroll). Indeed, whether or not a work merits the sought for emotional responses often seems to be internally related to ethical considerations (Gaut). Yet, it is not obvious that we should apply our moral concepts or respond emotionally in our imaginative engagement with works as art as we should in real life (Kieran, Jacobson). A different route is via the thought that art can convey knowledge (Topic IV). There might be particular kinds of moral knowledge art distinctively suited to conveying (Nussbaum) or it may just be that art does so particularly effectively (Carroll, Gaut, Kieran). Either way where this can be tied to the artistic means and appreciation of a work it would seem that to cultivate moral understanding contributes to the value of a work and to betray misunderstanding is a defect. Without denying the relevance of the moral character of a work some authors have wanted to claim that sometimes the immoral aspect of a work can contribute to rather than lessen its artistic value (Topic V). One route is to claim that there is no systematic theoretical account of the relationship available and what the right thing to say is depends on the particular case involved (Jacobson). Another involves the claim that this is so when the defect connects up in an appropriate way to one of the values of art. Thus, it has been claimed, only where a work reveals something which adds to intelligibility, knowledge or understanding in virtue of its morally problematic aspect can this be so (Kieran). The latter position looks like it could in principle be held whilst nonetheless maintaining that the typical or standard relationship is as the moralists would have it. Yet perhaps allowing valence change for such reasons is less a mark of principled explanation and more a function of downright inconsistency or incoherence (Harold). The topics themselves and suggested readings given below follow the structure articulated above as further amplified in the Compass survey article. The design and structure given below can be easily compressed or expanded further. Author Recommends 1 Carroll, Noël. ‘Art, Narrative and Moral Understanding.’Aesthetics and Ethics: Essay at the Intersection. Ed. Jerrold Levinson. Cambridge: Cambridge UP, 1998. 126–60. 2 This article develops the idea that engaging with narrative art calls on moral concepts and emotions and can thereby clarify our moral understanding. 2 Carroll, Noël. Beyond Aesthetics: Philosophical Essays. Cambridge: Cambridge UP, 2009. 4 Part IV consists of six distinct essays on questions concerning the inter‐relations between art and morality including the essay cited above and the author’s articulation and defence of moderate moralism. 3 Gaut, Berys. ‘The Ethical Criticism of Art.’Aesthetics and Ethics: Essay at the Intersection. Ed. Jerrold Levinson. Cambridge: Cambridge UP, 1998. 182–203. 4 Gaut, Berys. Art, Emotion and Ethics. Oxford: Oxford UP, 2007. 7 This monograph provides the most exhaustive treatment of the issues and defends the claim that, where relevant, whenever a work is morally flawed it is of lesser value as art and wherever it is morally virtuous the work’s value as art is enhanced. Chapters 7 and 8 defend concern ethical knowledge and chapter 10 is a development of the article cited above concerning emotional responses. Chapter 3 also gives a useful conceptual map of the issues and options in the debate. 5 Jacobson, Daniel. ‘In Praise of Immoral Art.’Philosophical Topics 25 (1997): 155–99. 9 A wide ranging and extended treatment of relevant issues which objects to generalising moral treatments of our responses to art works and defends the idea that particular works can be better because of rather than despite their moral defects. 6 Kieran, Matthew. ‘Forbidden Knowledge: The Challenge of Cognitive Immoralism.’Art and Morality. Ed. Sebastian Gardner and José Luis Bermúdez. London: Routledge, 2003. 56–73. 11 A general argument for immoralism is elaborated by outlining when, where and why a work’s morally problematic character can contribute to its artistic value for principled reasons (through enhancing moral understanding). 7 Kieran, Matthew. Revealing Art. London: Routledge, 2005. Chapter 4. 13 This chapter argues against both aestheticism and straightforward moralism about art, elaborating a defence of immoralism in relation to visual art whilst ranging over issues from pornographic art to the nature and demands of different genres in art. 8 Lamarque, Peter. ‘Cognitive Values in the Arts: Marking the Boundaries.’ Contemporary Debates in Aesthetics and the Philosophy of Art. Ed. Matthew Kieran. Oxford: Blackwell, 2006, 127–39. 15 This article concisely outlines and defends a sophisticated aestheticism that denies the importance of truth to artistic value. 9 Stolnitz, Jerome. ‘On the Cognitive Triviality of Art.’British Journal of Aesthetics 32.3 (1992): 191–200. 17 This article articulates and defends the claim that no knowledge of any interesting or significant kind can be afforded by works appreciated and evaluated as art. 10 Walton, Kendall. ‘Morals in Fiction and Fictional Morality, I.’Proceedings of the Aristotelian Society, Suppl. 68 (1994): 27–51. 19 This article builds on some comments from Hume to develop the idea that when engaging with fictions it seems impossible imaginatively to enter into radically deviant moral attitudes. Online Materials ‘Aesthetics and Ethics: The State of the Art.’American Society of Aesthetics online (Jeffrey Dean):. ‘Art, Censorship and Morality’ downloadable podcast of Nigel Warburton interviewing Matthew Kieran at Tate Britain (BBC/ou Open2.net as part of the Ethics Bites series):. ‘Art, Morality and Ethics: On the (Im)Moral Character of Art Works and Inter‐Relations to Artistic Value.’Philosophy Compass 1.2 (2006): 129–43 (Matthew Kieran):. ‘Ethical Criticism of Art.’Internet Encyclopedia of Philosophy (Ella Peek):. ‘Fascinating Fascism.’New York Review of Books Piece Discussing Leni Riefenstahl (Susan Sontag):. ‘The Beheading of St. John the Baptist (1450s), Giovanni de Paolo’ (Tom Lubbock):. Vladimir Nabokov and Lionel Trilling discuss Lolita (CBS):. Sample Syllabus Topic I Autonomism/aestheticism • Anderson, James C. and Jeffrey T. Dean. ‘Moderate Autonomism.’British Journal of Aesthetics 38.2 (1998): 150–66. • Beardsley, Monroe. Aesthetics: Problems in the Philosophy of Criticism. New York: Harcourt, Brace and World, 1958. Chapter 12. • Kant, Immanuel. The Critique of Judgement.Trans. James Creed Meredith. Oxford: Oxford UP, 1952 [1790]. • Lamarque, Peter. ‘Cognitive Values in the Arts: Marking the Boundaries.’Contemporary Debates in Aesthetics and the Philosophy of Art. Ed. Matthew Kieran. Oxford: Blackwell, 2006, 127–39. • ——. ‘Tragedy and Moral Value.’Australasian Journal of Philosophy 73.2 (1995): 239–49. • Lamarque, Peter and Stein Olsen. Truth, Fiction and Literature. Oxford: Clarendon Press, 1994. Chapter 10. • Stolnitz, Jerome. ‘On the Cognitive Triviality of Art.’British Journal of Aesthetics 32.3 (1992): 191–200. Topic II Imaginative Capacities, Intelligibility and Resistance • Moran, Richard. ‘The Expression of Feeling in Imagination.’Philosophical Review 103.1 (1994): 75–106. • Nichols, Shaun. ‘Just the Imagination: Why Imagining Doesn’t Behave Like Believing’. Mind & Language 21.4 (2006): 459–74. • Stokes, Dustin. ‘The Evaluative Character of Imaginative Resistance’. British Journal of Aesthetics 46.4 (2006): 387–405. • Tanner, Michael. ‘Morals in Fiction and Fictional Morality, II’. Proceedings of the Aristotelian Society, Suppl. Vol. 68 (1994): 51–66. • Walton, Kendall (1994). ‘Morals in Fiction and Fictional Morality, I’. Proceedings of the Aristotelian Society, Suppl. Vol. 68 (1994): 27–51. • Weinberg, Jonathan. ‘Configuring the Cognitive Imagination.’New Waves in Aesthetics. Eds. K. Stock and K. Thomson‐Jones. London: Palgrave Macmillan, 2008. 203–23. Topic III Moralism and Emotions • Carroll, Noël. ‘Moderate Moralism.’British Journal of Aesthetics 36.3 (1996): 223–37. • Carroll, Noël. ‘Art, Narrative and Moral Understanding.’Aesthetics and Ethics: Essay at the Intersection. Ed. Jerrold Levinson. Cambridge: Cambridge UP, 1998.126–60. • Gaut, Berys. Art, Emotion and Ethics. Oxford: Oxford UP, 2007. Chapter 10. • ——. ‘The Ethical Criticism of Art.’Aesthetics and Ethics: Essay at the Intersection. Ed. Jerrold Levinson. Cambridge: Cambridge UP, 1998. 182–203. • Hume, David. ‘Of the Standard of Taste.’Selected Essays. Oxford: Oxford UP, 1993 [1757]. 133–53. • Kieran, Matthew. ‘Emotions, Art and Immorality.’Oxford Handbook to the Philosophy of Emotions. Ed. Peter Goldie. Oxford: Oxford UP, 2009. 681–703. • Tolstoy, Leo. What is Art?. London: Penguin, 2004. Chapters 5 and 15. Topic IV Moralism and Knowledge • Aristotle. Poetics. Trans. M. Heath. London: Penguin, 1996 [367–322 BC]. • Carroll, Noël. ‘The Wheel of Virtue: Art, Literature and Moral Knowledge.’Journal of Aesthetics and Art Criticism 60.1 (2002): 3–26. • Gaut, Berys. Art, Emotion and Ethics. Oxford: Oxford UP, 2007. Chapters 7 and 8. • Gaut, Berys. ‘Art and Cognition.’Contemporary Debates in Aesthetics and the Philosophy of Art. Ed. Matthew Kieran. Oxford: Blackwell, 2006. 115–26. • Kieran, Matthew. ‘Art, Imagination and the Cultivation of Morals.’Journal of Aesthetics and Art Criticism 54.4 (1996): 337–51. • Nussbaum, Martha. ‘Finely Aware and Richly Responsible: Literature and the Moral Imagination.’Love’s Knowledge. New York: Oxford UP, 1990. 148–68. • Plato. The Republic. Trans. D. Lee. Harmondsworth: Penguin, 1974. Book 10. Topic V Immoralist Contextualism • Harold, James. ‘Immoralism and the Valence Constraint.’British Journal of Aesthetics 48.1 (2008): 45–64. • Jacobson, Daniel. ‘In Praise of Immoral Art.’Philosophical Topics 25 (1997): 155–99. • ——. ‘Ethical Criticism and the Vices of Moderation.’Contemporary Debates in Aesthetics and the Philosophy of Art. Ed. Matthew Kieran. Oxford: Blackwell, 2006. 342–55. • John, Eileen. ‘Artistic Value and Moral Opportunism.’Contemporary Debates in Aesthetics and the Philosophy of Art. Ed. Matthew Kieran. Oxford: Blackwell, 2006. 331–41. • Kieran, Matthew. ‘Forbidden Knowledge:The Challenge of Cognitive Immoralism.’Art and Morality. Ed. Sebastian Gardner and José Luis Bermúdez. London: Routledge, 2003. 56–73. • Kieran, Matthew. Revealing Art. London: Routledge, 2005. Chapter 4. • Patridge, Stephanie. ‘Moral Vices as Artistic Virtues: Eugene Onegin and Alice.’Philosophia 36.2 (2008): 181–93. Focus Questions 1 What is the strongest argument for the claim that the moral character of a work is not relevant to its artistic value? Does artistic or literary criticism tend to concern itself with the truth or morality of works? If so, in what ways? If not, why do you think this is? 2 What different explanations might there be for difficulty with or resistance to imaginatively entering into attitudes you take to be immoral? How might this relate to the way our imaginings work as contrasted with belief? How might different literary or artistic treatments of the same subject matter make a difference? 3 How do narrative works draw on our moral concepts and responses? Can we suspend our normal moral commitments or application of moral concepts in responding emotionally to art works? Should we respond emotionally to art works as we ought to respond to real world events we witness? Why? Why not? 4 How, if at all, do art works convey moral understanding? How, if at all, is this related to the kinds of moral knowledge art works can teach or reveal to us? When, where and why might this be tied to the artistic value of a work? How can we tell where a work enhances our moral understanding as opposed to misleading or distorting it? 5 What art works do you value overall as art which commend or endorse moral values and attitudes that you do not? Is appreciation of them always marred or lessened by the morally dubious aspect? If not, what explains the differences in evaluation? What, if anything, might you learn by engaging with works which endorse moral attitudes or apply moral concepts different from those you take to be justified? How, if at all, might this connect up with what makes them valuable as art? (shrink)

Commercial genetic testing offered over the internet, known as direct-to-consumer genetic testing (DTC GT), currently is under ethical attack. A common critique aims at the limited validation of the tests as well as the risk of psycho-social stress or adaption of incorrect behavior by users triggered by misleading health information. Here, we examine in detail the specific role of advertising communication of DTC GT companies from a medical ethical perspective. Our argumentative analysis departs from the starting point that (...) DTC GT operates at the intersection of two different contexts: medicine on the one hand and the market on the other. Both fields differ strongly with regard to their standards of communication practices and the underlying normative assumptions regarding autonomy and responsibility. Following a short review of the ethical contexts of medical and commercial communication, we provide case examples for persuasive messages of DTC GT websites and briefly analyze their design with a multi-modal approach to illustrate some of their problematic implications. We observe three main aspects in DTC GT advertising communication: (1) the use of material suggesting medical professional legitimacy as a trust-establishing tool, (2) the suggestion of empowerment as a benefit of using DTC GT services and (3) the narrative of responsibility as a persuasive appeal to a moral self-conception. While strengthening and respecting the autonomy of a patient is the focus in medical communication, specifically genetic counselling, persuasive communication is the normal mode in marketing of consumer goods, presuming an autonomous, rational, independent consumer. This creates tension in the context of DTC GT regarding the expectation and normative assessment of communication strategies. Our analysis can even the ground for a better understanding of ethical problems associated with intersections of medical and commercial communication and point to perspectives of analysis of DTC GT advertising. (shrink)

Precision medicine promises to develop diagnoses and treatments that take individual variability into account. According to most specialists, turning this promise into reality will require adapting the established framework of clinical research ethics, and paying more attention to participants’ attitudes towards sharing genotypic, phenotypic, lifestyle data and health records, and ultimately to their desire to be engaged as active partners in medical research.Notions such as participation, engagement and partnership have been introduced in bioethics debates concerning genetics and large-scale (...) biobanking to broaden the focus of discussion beyond individual choice and individuals’ moral interests. The uptake of those concepts in precision medicine is to be welcomed. However, as data and medical information from research participants in precision medicine cohorts will be collected on an individual basis, translating a participatory approach in this emerging area may prove cumbersome. Therefore, drawing on Joseph Raz’s perfectionism, we propose a principle of respect for autonomous agents that, we reckon, can address many of the concerns driving recent scholarship on partnership and public participation, while avoiding some of the limitations these concept have in the context of precision medicine. Our approach offers a normative clarification to how becoming partners in precision is compatible with retaining autonomy.Realigning the value of autonomy with ideals of direct engagement, we show, can provide adequate normative orientation to precision medicine; it can do justice to the idea of moral pluralism by stressing the value of moral self-determination: and, finally, it can reconcile the notion of autonomy with other more communitarian values such as participation and solidarity. (shrink)

Books have their origins in conversations and seek to extend and expand those conversations over time and with different audiences. The conversations that have culminated in this book were initially stimulated through a research project at The Hastings Center on the role of religious voices in the professional fields of bioethical inquiry. Those professional conversations have continued throughout my academic career as a member of various institutional ethics committees, organizational ethics task forces, and in local, state, and national public policy (...) settings. The professional context of bioethics conversations can sometimes miss the richness of conversations that occur in the classroom and with various communities, including family members, friends, and religious and civic communities. These conversations provide an experiential depth, a groundedness in the lives and stories of persons, which augments and corrects the professionalized perspectives. I have been particularly fortunate and appreciative of opportunities to bridge the academic and professional with the personalized and communal through conversations about the ethical commitments and moral culture cultivated by The Church of Jesus Christ of Latter-day Saints (LDS or Mormon). I was invited to develop an overview essay on "Bioethics in Mormonism" for the professional reference work, Encyclopedia of Bioethics (3rd ed., 2004), and some years later received my first invitation to make a presentation on "LDS Ethics" in an academic setting at the University of Virginia. This book is the outgrowth of these many conversations and seeks to advance my communal bridging. My aim in this book is to begin bridging these various intersections between the LDS religious community and its moral culture, the professional fields of bioethics, and practical decision-making. This work seeks to be a catalyst for expanding discourse within the interdisciplinary field of Mormon studies to include ethics and bioethics. Ethics has not been a well-developed area in Mormon studies, in contrast to studies in LDS history, theology, or literature. To remedy this oversight, I present a substantive interpretation of the sources, theological background, and moral principles of LDS ethics. The historical narratives and conceptual intertwining I offer of both bioethics and of LDS moral culture is intended to complement and expand the realm of Mormon studies. A further objective is to create opportunities for reciprocal dialogues between the bioethics community and LDS scholarship. This conversation has yet to occur within academic disciplines, professional communities, or in public policy deliberations. My exposition, analysis, and critiques will intertwine and contextualize LDS moral values and health care practices within the ethical inquiry undertaken in the broader professional scholarship of bioethics. My arguments will disclose some points of common ground as well as areas of divergence towards the end of establishing the LDS faith tradition as a community of moral discourse for the bioethics field and the healing professions (medicine, nursing, pharmacy, etc.) it informs. My claim is that given its emerging cultural prominence, LDS ethical scholarship should engage in bioethical literacy and bioethics should be LDS-literate. I am also engaged in an effort to initiate more reflective dialogues regarding LDS ethics and moral culture among LDS scholars, LDS health care professionals, and the interested general LDS reader. The focus of the book on the interrelationship of religion, ethics, medicine, and health care should present for these various audiences new opportunities for mindful reflection and creative scholarship on the ethical implications of faith commitments, the responsibilities of the healing professions, and religious dimensions of public policy and public bioethics. A religious community that is formed through narratives and practices of covenantal commitments of love of neighbor needs to have a robust discourse about its ethical character. I have understood my scholarship in biomedical ethics and in religious ethics through a linking metaphor of my moral culture, of medicine, and the law, of bearing witness. The witness offers moral realities, moral truths about the way things are, vocalizes and embodies moral experience, and prophetically critiques the hypocrisies of the powerful and their oppression of the vulnerable by offering a new story, a re-storying, of tradition and conventional practice. (shrink)

While evidence-based medicine (EBM) is often accused on relying on a paradigm of 'absolute truth', it is in fact highly consistent with Karl Popper's criterion of demarcation through falsification. Even more relevant, the first three steps of the EBM process are closely patterned on Popper's evolutionary approach of objective knowledge: (1) recognition of a problem; (2) generation of solutions; and (3) selection of the best solution. This places the step 1 of the EBM process (building an answerable question) in (...) a pivotal position for the understanding of the whole process, and underscores a few aspects which are often overlooked in EBM courses. First in this step internal evidence (including personal expertise) must be appraised and integrated in the problem. Second, issues of applicability of the possible solution should be anticipated. Third, and possibly more important, the goal of the intervention should be set at this stage (typically by choosing the outcome in a PICO question). Depending whether or not goals depend on the goals of others, and whether they concern others' voluntary behaviour, goals may be classified as self-serving, moral, altruistic or moralistic. Thus, delicate ethical questions must be addressed at this stage, which means that patient preferences and values must be carefully sought, so that empathy, counselling and narrative medicine must be mastered to be able to formulate correctly an answerable question. The need to modify the current description of the EBM process to increase the recognition of implicit assumptions and increase the consistency of this model is discussed. (shrink)

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 to frame the participants’ experience with fluid moral boundaries. By framing our approach through this concept we are able to elucidate irremediable moral issues that are collectively underexplored in the practice of precision medicine. Moral ambiguity accentuates an open and free space where different types of perspectives converge and can inform each other. Based on our study, we identified two dilemmas, or thematic interfaces, in the interdisciplinary moral deliberations which unfolded in the Ethics Laboratories: (1) the dilemma between the individual and the collective good; and (2) the dilemma between care and choice. Through our investigation of these dilemmas, we show how Beauvoir’s concept of moral ambiquity not only serves as a fertile catalyst for greater moral awareness but, furthermore, how the concept can become an indispensable part of the practices of and the discourse about precision medicine. (shrink)

ABSTRACT:Novel biotechnologies produce new person-related biological entities, such as cell lines, organoids, and synthetic organisms, that tend to disrupt existing concepts, taxonomies, modes of evidence production, as well as moral norms and values. This raises the question of how we can manage these new person-related biological entities. This article identifies and analyzes key conceptual, ontological, epistemological, and ethical aspects of such entities in order to suggest how to make, manage, and regulate them. It argues that in order to (...) avoid conceptual vagueness and taxonomic confusion, it is important to clarify how person-related biological entities relate to existing concepts and to make new concepts where necessary. Ontologically, we need to determine the thing- and person-likeness of such entities. Epistemically, we must provide measures to verify the characteristics of person-related biological entities and to provide high-quality knowledge of their implications (outcomes). And ethically, we must clarify the moral status, rights, and responsibility for and of the entities, and how they will change our norms and values. Addressing these issues up front may improve our making and managing of person-related biological entities. (shrink)

Biomedical research on humans is an important part of medical progress. But, when lives are at risk, safety and ethical practices need to be the top priority. The need for the committees that regulate and oversee such research -- institutional review boards, or IRBs -- is growing. IRB members face difficult decisions every day. Evaluating the Science and Ethics of Research on Humans is a guide for new and veteran members of IRBs that will help them better understand the (...) issues involved and the tasks they will be required to perform. The most important purpose of an IRB is to protect the lives of human participants. For three major research areas -- drugs, medical devices, and genetic information -- Dennis J. Mazur shares the methods he has found useful in protecting human participants through the systematic review of scientific protocols and informed consent forms and through adherence to the federal regulations that apply. New members will gain understanding of how proposed research projects are to be reviewed from both scientific and ethical dimensions, how and when to ask key questions of principal investigators, how to work with principal investigators and research teams to ensure the best protection of human participants, and why to schedule regularly spaced reviews of a project that may have adverse outcomes. Based on Mazur's thirty years of research experience, this accessible and informative guide will give all IRB members the tools they need to protect human lives and facilitate the research process. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 12.1 (2002) 103-113 [Access article in PDF] Scope Note Update Searching Across Boundaries: National Information Resource on Ethics and Human Genetics* While indeed an historical moment, the announcement of the mapping of the human genome has been treated in the literature as a beginning—a new way to think about biology and the ways in which biological concepts are applied to medicine. Issues of (...) both Science and Nature magazines celebrated the event by establishing interdisciplinary websites where readers can access essays on aspects of genome mapping and directly link to databases to search for more information on the topics (IV. Genome Gateway 2001; The Human Genome 2001). Since 1994, the National Information Resource on Ethics and Human Genetics (NIREHG), a special project of the National Reference Center for Bioethics Literature (NRC), has been providing such an integrated information service on ethics and genetics. Designed to enable a wide range of users to go from annotated bibliographies (Scope Notes) and brief essays (called "enotes") to database searching, NIREHG fosters an interdisciplinary approach to research on ethics and genetics. Links are provided between and among Scope Notes and enotes to information maintained on the NIREHG site as well as to sources found throughout the Internet. In providing the following annotations added to NIREHG materials since 1997, the Kennedy Institute of Ethics Journal (in its online presence through Project Muse) becomes an additional forum for NIREHG links. "It is a rare and wonderful moment when success teaches us humility, and this, I argue, is precisely the moment at which we find ourselves at the end of the twentieth century" (IV. Keller 2000, p. 7). It is with both joy and humility that we celebrate the mapping of the human genome. [End Page 103] I. Genetic Testing Andrews, Lori B. Future Perfect: Confronting Decisions About Genetics. New York: Columbia University Press, 2001. 264 p.Noting the wide impact of genetic testing, Andrews discusses patient self concept, reproduction decisions, confidentiality, discriminations in health insurance and employment, the need for competent counseling, and the legal, ethical, and social regulations she deems important to help solve dilemmas arising from the tests and their ensuing ramifications. She describes three models, pointing out both advantages and problems: a medical model with physician gatekeepers, a public health model that could provide education as well some testing for those unable to afford tests, and a fundamental rights model that could give greater weight to individuals decisions about the use of health care services. The book has 85 pages of footnotes.American Society of Human Genetics. Social Issues Subcommittee on Familial Disclosure. Professional Disclosure of Familial Genetic Information. American Journal of Human Genetics 62 (2): 474-83, February 1998.The ASHG statement outlines points to consider: the general rule of confidentiality, exceptional circumstances that permit disclosure, and the ethical duty to inform patients about familial implications. Background discussion includes: ethical frameworks for disclosure of otherwise confidential information, the duty to warn under law, and international trends and positions.Boetzkes, Elisabeth. Genetic Knowledge and Third-Party Interests. Cambridge Quarterly of Healthcare Ethics 8 (4): 386-92, Summer 1999.Protection from the interests of insurers or prospective employers are discussed from the point of view of the ethical basis of the professional obligation to confidentiality as well as the right to privacy of those tested. However, the author supports family members, saying that "first-party resistance to disclosure may be overcome by weighty third-party claims."Chadwick, Ruth; Shickle, Darren; ten Have, Henk; and Wiesing, Urban, eds. The Ethics of Genetic Screening. Dordrecht, The Netherlands: Kluwer Academic Publishers, 1999. 255 p.Twenty-one chapters and 23 authors provide views of genetic testing/screening in different European countries and offer brief discussions of sociological perspectives, moral and philosophical issues, privacy, reconciling liberty and the common good, and questions raised in genetic testing of children.Clayton, Ellen Wright. Genetic Testing in Children. Journal of Medicine and Philosophy 22 (3): 233-51, June 1997.Clayton argues that there is room for... (shrink)

I take up the call for a more nuanced engagement with race in bioethics by using Creary’s analytic of bounded justice and argue that it helps illuminate processes of racialization, or racial formation, specifically Blackness, as a dialectical processes of both invisibility and hyper-visibility. This dialectical view of race provides a lens through which the ethical, legal, and social implications (ELSI) of genetics and genomics field can reflect on fraught issues such as inclusion in genomic and biomedical research. Countering (...) or interrupting racialization in precision medicine can involve asking how marginalized groups are made invisible or hyper-visible in various aspects of the research process. Incorporating these kinds of questions into biomedical research inclusion efforts could lead to potentially powerful engagements with marginalized groups and could provide the opportunity for stakeholders to engage with the ways that racialization can happen in real-time and might undermine good intentions. (shrink)

HIV/AIDS prevention campaigns have been overshadowed by conflicting, competing, and contradictory views between those who support condom use as a last resort and those who are against it for fear of promoting sexual immorality. We argue that abstinence and faithfulness to one partner are the best available moral solutions to the HIV/AIDS pandemic. Of course, deontologists may argue that condom use might appear useful and effective in controlling HIV/AIDS; however, not everything that is useful is always good. In principle, (...) all schools of thought and faith seem to agree on the question of faithfulness for married couples and abstinence for those who are not married. But they differ on condom use. On the ground, the situation is far more complex. We simply lack a single, entirely reliable way to resolve all disagreements regarding HIV/AIDS prevention strategies. (shrink)

This book focuses on experimentation that is carried out on human beings, including medical research, drug research and research undertaken in the social sciences. It discusses the ethics of such experimentation and asks the question: who defends the interests of these human subjects and ensures that they are not harmed? The author finds that ethical research depends on the adequacy of review by committee. Indeed most countries now rely on research ethics committees for the protection of the interests of (...) the human participants in research. Dr McNeill analyses how successful these committees are in balancing the interests of science with the interests of human subjects. (shrink)

What is the relationship between scientific research and ethics? Some think that science should be free from ethical and political considerations. _Biomedical Research and Beyond_ argues that ethical guidance is essential for all forms of inquiry, including biomedical and scientific research. By addressing some of the most controversial questions of biomedical research, such as embryonic research, animal research, and genetic enhancement research, the author argues for a rich moral framework for the ethics of inquiry, based on the (...) ideal of human flourishing. He then looks at other areas of inquiry, such as journalistic ethics, and military investigation, to see how similar they are to the ethics of scientific research. Finally, he looks at the virtues that must play a role in any life that is devoted to research and inquiry as a vocational commitment. (shrink)

The aim of this paper is to provide a conceptual framework that will help in understanding and evaluating, along social and ethical lines, the issue of killing day-old male chicks and two alternative directions of responsible innovations to solve this issue. The following research questions are addressed: Why is the killing of day-old chicks morally problematic? Are the proposed alternatives morally sound? To what extent do the alternatives lead to responsible innovation? The conceptual framework demonstrates clearly that there is (...) a moral “lock-in”, and why the killing of day-old chicks is indeed an issue. Furthermore, it is shown that both alternative directions address some important objections with regard to the killing of day-old chicks, but that they also raise new dilemmas. It also becomes clear that the framework enables and secures anticipation, reflection, deliberation with and responsiveness to stakeholders, the four dimensions of responsible innovation, in a structured way. (shrink)

The objective of this article is to investigate ethical aspects of technology through the moral term “paternalism”. The field of investigation is medicine. The reason for this is twofold. Firstly, “paternalism” has gained moral relevance through modern medicine, where physicians have been accused of behaving paternalistic and threatening patients’ autonomy. Secondly, medicine is a brilliant area to scrutinise the evaluative aspects of technology. It is argued that paternalism is a morally relevant term for the (...) ethics of technology, but that its traditional conception is not adequate to address the challenges of modern technology. A modification towards a “technological paternalism” is necessary. That is, “technological paternalism” is a fruitful term in the ethics of technology. Moreover, it is suited to point out the deficiencies of the traditional concept of paternalism and to reform and vitalise the conception of paternalism in ethics in order to handle the challenges of technology. (shrink)

Previous papers on ethics consultation in medicine have taken a positivistic approach and lack critical scrutiny of the psychosocial, political, and moral contexts in which consultations occur. This paper discusses some of the contextual factors that require more careful research. We need to know more about what prompts and inhibits consultation, especially what factors effectively prevent house officers and nonphysicians from requesting consultation despite perceived moral conflict in cases. The attitudes and institutional power of attending medical staff (...) seem important, especially where innovative interventions raise ethical questions. Ethics consultants also need to address the thorny problems of the origin(s) of the consultant's authority, whistleblowing, conflicts of interest that affect the consultant, persistently poor communications in hospitals, systemic inequity in the availability or quality of services for some, and the standing of the consultant's recommendations, including their appearance in the patient's medical record. (shrink)

The sixth edition of the Manual for Research Ethics Committees is a unique compilation of legal and ethical guidance which will prove invaluable for members of research ethics committees, researchers involved in research with humans, members of the pharmaceutical industry and students of law, medicine, ethics and philosophy. Presented in a clear and authoritative form, it incorporates the key legal and ethical guidelines and specially written chapters on major topics in bioethics by leading academic authors and practitioners, (...) pharmaceutical industry associations and professional bodies. In the sixth edition there are fifteen new chapters covering key issues from participation in clinical trials to cloning, and for the first time the manual has been produced in one easy-to-search hardback volume. (shrink)

ABSTRACT I argue that this examination and appreciation for the shift to abductive reasoning should be extended to the intersection of neuroscience and novel brain-computer interfaces too. This paper highlights the implications of applying abductive reasoning to personalized implantable neurotechnologies. Then, it explores whether abductive reasoning is sufficient to justify insurance coverage for devices absent widespread clinical trials, which are better applied to one-size-fits-all treatments. INTRODUCTION In contrast to the classic model of randomized-control trials, often with a large number of (...) subjects enrolled, precision medicine attempts to optimize therapeutic outcomes by focusing on the individual.[i] A recent publication highlights the strengths and weakness of both traditional evidence-based medicine and precision medicine.[ii] Plus, it outlines a tension in the shift from evidence-based medicine’s inductive reasoning style (the collection of data to postulate general theories) to precision medicine’s abductive reasoning style (the generation of an idea from the limited data available).[iii] The paper’s main example is the application of precision medicine for the treatment of cancer.[iv] I argue that this examination and appreciation for the shift to abductive reasoning should be extended to the intersection of neuroscience and novel brain-computer interfaces too. As the name suggests, brain-computer interfaces are a significant advancement in neurotechnology that directly connects someone’s brain to external or implanted devices.[v] Among the various kinds of brain-computer interfaces, adaptive deep brain stimulation devices require numerous personalized adjustments to their settings during the implantation and computation stages in order to provide adequate relief to patients with treatment-resistant disorders. What makes these devices unique is how adaptive deep brain stimulation integrates a sensory component to initiate the stimulation. While not commonly at the level of sophistication as self-supervising or generative large language models,[vi] they currently allow for a semi-autonomous form of neuromodulation. This paper highlights the implications of applying abductive reasoning to personalized implantable neurotechnologies. Then, it explores whether abductive reasoning is sufficient to justify insurance coverage for devices absent widespread clinical trials, which are better applied to one-size-fits-all treatments.[vii] ANALYSIS I. The State of Precision Medicine in Oncology and the Epistemological Shift While a thorough overview of precision medicine for the treatment of cancer is beyond the scope of this article, its practice can be roughly summarized as identifying clinically significant characteristics a patient possesses (e.g., genetic traits) to land on a specialized treatment option that, theoretically, should benefit the patient the most.[viii] However, in such a practice of stratification patients fall into smaller and smaller populations and the quality of evidence that can be applied to anyone outside these decreases in turn.[ix] As inductive logic helps to articulate, the greater the number of patients that respond to a particular therapy the higher the probability of its efficacy. By straying from this logical framework, precision medicine opens the treatment of cancer to more uncertainty about the validity of these approaches to the resulting disease subcategories.[x] Thus, while contemporary medical practices explicitly describe some treatments as “personalized”, they ought not be viewed as inherently better founded than other therapies.[xi] A relevant contemporary case of precision medicine out of Norway focuses on the care of a patient with cancer between the ventricles of the heart and esophagus, which had failed to respond to the standard regimen of therapies over four years.[xii] In a last-ditch effort, the patient elected to pay out-of-pocket for an experimental immunotherapy (nivolumab) at a private hospital. He experienced marked improvements and a reduction in the size of the tumor. Understandably, the patient tried to pursue further rounds of nivolumab at a public hospital. However, the hospital initially declined to pay for it given the “lack of evidence from randomised clinical trials for this drug relating to this [patient’s] condition.”[xiii] In rebuttal to this claim, the patient countered that he was actually similar to a subpopulation of patients who responded in “open‐label, single arm, phase 2 studies on another immune therapy drug” (pembrolizumab).[xiv] Given this interpretation of the prior studies and the patient’s response, further rounds of nivolumab were approved. Had the patient not had improvements in the tumor’s size following a round of nivolumab, then pembrolizumab’s prior empirical evidence in isolation would have been insufficient, inductively speaking, to justify his continued use of nivolumab.[xv] The case demonstrates a shift in reasoning from the traditional induction to abduction. The phenomenon of ‘cancer improvement’ is considered causally linked to nivolumab and its underlying physiological mechanisms.[xvi] However, “the weakness of abductions is that there may always be some other better, unknown explanation for an effect. The patient may for example belong to a special subgroup that spontaneously improves, or the change may be a placebo effect. This does not mean, however, that abductive inferences cannot be strong or reasonable, in the sense that they can make a conclusion probable.”[xvii] To demonstrate the limitations of relying on the abductive standard in isolation, commentators have pointed out that side effects in precision medicine are hard to rule out as being related to the initial intervention itself unless trends from a group of patients are taken into consideration.[xviii] As artificial intelligence (AI) assists the development of precision medicine for oncology, this uncertainty ought to be taken into consideration. The implementation of AI has been crucial to the development of precision medicine by providing a way to combine large patient datasets or a single patient with a large number of unique variables with machine learning to recommend matches based on statistics and probability of success upon which practitioners can base medical recommendations.[xix] The AI is usually not establishing a causal relationship[xx] – it is predicting. So, as AI bleeds into medical devices, like brain-computer interfaces, the same cautions about using abductive reasoning alone should be carried over. II. Responsive Neurostimulation, AI, and Personalized Medicine Like precision medicine in cancer treatment, computer-brain interface technology similarly focuses on the individual patient through personalized settings. In order to properly expose the intersection of AI, precision medicine, abductive reasoning, and implantable neurotechnologies, the descriptions of adaptive deep brain stimulation systems need to deepen.[xxi] As a broad summary of adaptive deep brain stimulation, to provide a patient with the therapeutic stimulation, a neural signal, typically referred to as a local field potential,[xxii] must first be detected and then interpreted by the device. The main adaptive deep brain stimulation device with premarket approval, the NeuroPace Responsive Neurostimulation system, is used to treat epilepsy by detecting and storing “programmer-defined phenomena.”[xxiii] Providers can optimize the detection settings of the device to align with the patient’s unique electrographic seizures as well as personalize the reacting stimulation’s parameters.[xxiv] The provider adjusts the technology based on trial and error. One day machine learning algorithms will be able to regularly aid this process in myriad ways, such as by identifying the specific stimulation settings a patient may respond to ahead of time based on their electrophysiological signatures.[xxv] Either way, with AI or programmers, adaptive neurostimulation technologies are individualized and therefore operate in line with precision medicine rather than standard treatments based on large clinical trials. Contemporary neurostimulation devices are not usually sophisticated enough to be prominent in AI discussions where the topics of neural networks, deep learning, generative models, and self-attention dominate the conversation. However, implantable high-density electrocorticography arrays (a much more sensitive version than adaptive deep brain stimulation systems use) have been used in combination with neural networks to help patients with neurologic deficits from a prior stroke “speak” through a virtual avatar.[xxvi] In some experimental situations, algorithms are optimizing stimulation parameters with increasing levels of independence.[xxvii] An example of neurostimulation that is analogous to the use of nivolumab in Norway surrounds a patient in the United States who was experiencing both treatment-resistant OCD and temporal lobe epilepsy.[xxviii]Given the refractory nature of her epilepsy, implantation of an adaptive deep brain stimulation system was indicated. As a form of experimental therapy, her treatment-resistant OCD was also indicated for the off-label use of an adaptive deep brain stimulation set-up. Another deep brain stimulation lead, other than the one implanted for epilepsy, was placed in the patient’s right nucleus accumbens and ventral pallidum region given the correlation these nuclei had with OCD symptoms in prior research. Following this, the patient underwent “1) ambulatory, patient-initiated magnet-swipe storage of data during moments of obsessive thoughts; (2) lab-based, naturalistic provocation of OCD-related distress (naturalistic provocation task); and (3) lab-based, VR [virtual reality] provocation of OCD-related distress (VR provocation task).”[xxix] Such signals were used to identify when to deliver the therapeutic stimulation in order to counter the OCD symptoms. Thankfully, following the procedure and calibration the patient exhibited marked improvements in their OCD symptoms and recently shared her results publicly.[xxx] In both cases, there is a similar level of abductive justification for the efficacy of the delivered therapy. In the case study in which the patient was treated with adaptive deep brain stimulation, they at least had their neural activity tested in various settings to determine the optimum parameters for treatment to avoid them being based on guesswork. Additionally, the adaptive deep brain stimulation lead was already placed before the calibration trials were conducted, meaning that the patient had already taken on the bulk of the procedural risk before the efficacy could be determined. Such an efficacy test could have been replicated in the first patient’s cancer treatment, had it been biopsied and tested against the remaining immunotherapies in vitro. Yet, in the case of cancer with few options, one previous dose of a drug that appeared to work on the patient may justify further doses. However, as the Norwegian case presents, corroboration with known responses to a similar drug (from a clinical trial) could be helpful to validate the treatment strategy. (It should be noted that both patients were resigned to these last resort options regardless of the efficacy of treatment.) There are some elements of inductive logic seen with adaptive deep brain stimulation research in general. For example, abductively the focus could be that patient X’s stimulation parameters are different from patient Y’s and patient Z’s. In contrast, when grouped as subjects who obtained personalized stimulation, patients X, Y, and Z demonstrate an inductive aspect to this approach’s safety and/or efficacy. The OCD case holds plenty of abductive characteristics in line with precision medicine’s approach to treating cancer and as more individuals try the method, there will be additional data. With the gradual integration of AI into brain-computer interfaces in the name of efficacy, this reliance on abduction will continue, if not grow, over time. Moving forward, if a responsive deep brain stimulation treatment is novel and individualized (like the dose of nivolumab) and there is some other suggestion of efficacy (like clinical similarities to other patients in the literature), then it may justify insurance coverage for the investigative intervention, absent other unrelated reasons to deny it. III. Ethical Implications and Next Steps While AI’s use in oncology and neurology is not yet as prominent as its use in other fields (e.g., radiology), it appears to be on the horizon for both.[xxxi] AI can be found in both the functioning of the neurotechnologies as well as the implementation of precision medicine. The increasing use of AI may serve to further individualize both oncologic and neurological therapies. Given these implications and the handful of publications cited in this article, it is important to have a nuanced evaluation of how these treatments, which heavily rely on abductive justification, ought to be managed. The just use an abductive approach may be difficult as AI infused precision medicine is further pursued. At baseline, such technology relies on a level of advanced technology literacy among the general public and could exclude populations who lack access to basic technological infrastructure or know-how from participation.[xxxii] Even among nations with adequate infrastructure, as more patients seek out implantable neurotechnologies, which require robust healthcare resources, the market will favor patient populations that can afford this complex care.[xxxiii] If patients already have the means to pay for an initial dose/use of a precision medicine product out of pocket, should insurance providers be required to cover subsequent treatments?[xxxiv] That is, if a first dose of a cancer drug or a deep brain stimulator over its initial battery life is successful, patients may feel justified in having the costs of further treatments covered. The Norwegian patient’s experience implies there is a precedent for the idea that some public insurance companies ought to cover successful cancer therapies, however, insurance companies may not all see themselves as obligated to cover neurotechnologies that rely on personalized settings or that are based on precision/abductive research more than on clinical trials. CONCLUSION The fact that the cases outlined above rely on abductive style of reasoning implies that there may not be as strong a justification for coverage by insurance, as they are both experimental and individualized, when compared to the more traditional large clinical trials in which groups have the same or a standardized protocol (settings/doses). If a study is examining the efficacy of a treatment with a large cohort of patients or with different experimental groups/phases, insurance companies may conclude that the resulting symptom improvements are more likely to be coming from the devices themselves. A preference for inductive justification may take priority when ruling in favor of funding someone’s continued use of an implantable neurostimulator. There are further nuances to this discussion surrounding the classifications of these interventions as research versus clinical care that warrant future exploration, since such a distinction is more of a scale[xxxv] than binary and could have significant impacts on the “right-to-try” approach to experimental therapies in the United States.[xxxvi] Namely, given the inherent limitations of conducting large cohort trials for deep brain stimulation interventions on patients with neuropsychiatric disorders, surgically innovative frameworks that blend abductive and inductive methodologies, like with sham stimulation phases, have traditionally been used.[xxxvii] Similarly, for adaptive brain-computer interface systems, if there are no large clinical trials and instead only publications that demonstrate that something similar worked for someone else, then, in addition to the evidence that the first treatment/dose worked for the patient in question, the balance of reasoning would be valid and arguably justify insurance coverage. As precision approaches to neurotechnology become more common, frameworks for evaluating efficacy will be crucial both for insurance coverage and for clinical decision making. ACKNOWLEDGEMENT This article was originally written as an assignment for Dr. Francis Shen’s “Bioethics & AI” course at Harvard’s Center for Bioethics. I would like to thank Dr. Shen for his comments as well as my colleagues in the Lázaro-Muñoz Lab for their feedback. - [i] Jonathan Kimmelman and Ian Tannock, “The Paradox of Precision Medicine,” Nature Reviews. Clinical Oncology 15, no. 6 (June 2018): 341–42, https://doi.org/10.1038/s41571-018-0016-0. [ii] Henrik Vogt and Bjørn Hofmann, “How Precision Medicine Changes Medical Epistemology: A Formative Case from Norway,” Journal of Evaluation in Clinical Practice 28, no. 6 (December 2022): 1205–12, https://doi.org/10.1111/jep.13649. [iii] David Barrett and Ahtisham Younas, “Induction, Deduction and Abduction,” Evidence-Based Nursing 27, no. 1 (January 1, 2024): 6–7, https://doi.org/10.1136/ebnurs-2023-103873. [iv] Vogt and Hofmann, “How Precision Medicine Changes Medical Epistemology,” 1208. [v] Wireko Andrew Awuah et al., “Bridging Minds and Machines: The Recent Advances of Brain-Computer Interfaces in Neurological and Neurosurgical Applications,” World Neurosurgery, May 22, 2024, S1878-8750(24)00867-2, https://doi.org/10.1016/j.wneu.2024.05.104. [vi] Mark Riedl, “A Very Gentle Introduction to Large Language Models without the Hype,” Medium (blog), May 25, 2023, https://mark-riedl.medium.com/a-very-gentle-introduction-to-large-language-models-without-the-hype-5 f67941fa59e. [vii] David E. Burdette and Barbara E. Swartz, “Chapter 4 - Responsive Neurostimulation,” in Neurostimulation for Epilepsy, ed. Vikram R. Rao (Academic Press, 2023), 97–132, https://doi.org/10.1016/B978-0-323-91702-5.00002-5. [viii] Kimmelman and Tannock, 2018. [ix] Kimmelman and Tannock, 2018. [x] Simon Lohse, “Mapping Uncertainty in Precision Medicine: A Systematic Scoping Review,” Journal of Evaluation in Clinical Practice 29, no. 3 (April 2023): 554–64, https://doi.org/10.1111/jep.13789. [xi] Kimmelman and Tannock, “The Paradox of Precision Medicine.” [xii] Vogt and Hofmann, 1206. [xiii] Vogt and Hofmann, 1206. [xiv] Vogt and Hofmann, 1206. [xv] Vogt and Hofmann, 1207. [xvi] Vogt and Hofmann, 1207. [xvii] Vogt and Hofmann, 1207. [xviii] Vogt and Hofmann, 1210. [xix] Mehar Sahu et al., “Chapter Three - Artificial Intelligence and Machine Learning in Precision Medicine: A Paradigm Shift in Big Data Analysis,” in Progress in Molecular Biology and Translational Science, ed. David B. Teplow, vol. 190, 1 vols., Precision Medicine (Academic Press, 2022), 57–100, https://doi.org/10.1016/bs.pmbts.2022.03.002. [xx] Stefan Feuerriegel et al., “Causal Machine Learning for Predicting Treatment Outcomes,” Nature Medicine 30, no. 4 (April 2024): 958–68, https://doi.org/10.1038/s41591-024-02902-1. [xxi] Sunderland Baker et al., “Ethical Considerations in Closed Loop Deep Brain Stimulation,” Deep Brain Stimulation 3 (October 1, 2023): 8–15, https://doi.org/10.1016/j.jdbs.2023.11.001. [xxii] David Haslacher et al., “AI for Brain-Computer Interfaces,” 2024, 7, https://doi.org/10.1016/bs.dnb.2024.02.003. [xxiii] Burdette and Swartz, “Chapter 4 - Responsive Neurostimulation,” 103–4; “Premarket Approval (PMA),” https://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfpma/pma.cfm?id=P100026. [xxiv] Burdette and Swartz, “Chapter 4 - Responsive Neurostimulation,” 104. [xxv] Burdette and Swartz, 126. [xxvi] Sean L. Metzger et al., “A High-Performance Neuroprosthesis for Speech Decoding and Avatar Control,” Nature 620, no. 7976 (August 2023): 1037–46, https://doi.org/10.1038/s41586-023-06443-4. [xxvii] Hao Fang and Yuxiao Yang, “Predictive Neuromodulation of Cingulo-Frontal Neural Dynamics in Major Depressive Disorder Using a Brain-Computer Interface System: A Simulation Study,” Frontiers in Computational Neuroscience 17 (March 6, 2023), https://doi.org/10.3389/fncom.2023.1119685; Mahsa Malekmohammadi et al., “Kinematic Adaptive Deep Brain Stimulation for Resting Tremor in Parkinson’s Disease,” Movement Disorders 31, no. 3 (2016): 426–28, https://doi.org/10.1002/mds.26482. [xxviii] Young-Hoon Nho et al., “Responsive Deep Brain Stimulation Guided by Ventral Striatal Electrophysiology of Obsession Durably Ameliorates Compulsion,” Neuron 0, no. 0 (October 20, 2023), https://doi.org/10.1016/j.neuron.2023.09.034. [xxix] Nho et al. [xxx] Nho et al.; Erik Robinson, “Brain Implant at OHSU Successfully Controls Both Seizures and OCD,” OHSU News, accessed March 3, 2024, https://news.ohsu.edu/2023/10/25/brain-implant-at-ohsu-successfully-controls-both-seizures-and-ocd. [xxxi] Awuah et al., “Bridging Minds and Machines”; Haslacher et al., “AI for Brain-Computer Interfaces.” [xxxii] Awuah et al., “Bridging Minds and Machines.” [xxxiii] Sara Green, Barbara Prainsack, and Maya Sabatello, “The Roots of (in)Equity in Precision Medicine: Gaps in the Discourse,” Personalized Medicine 21, no. 1 (January 2024): 5–9, https://doi.org/10.2217/pme-2023-0097. [xxxiv] Green, Prainsack, and Sabatello, 7. [xxxv] Robyn Bluhm and Kirstin Borgerson, “An Epistemic Argument for Research-Practice Integration in Medicine,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 43, no. 4 (July 9, 2018): 469–84, https://doi.org/10.1093/jmp/jhy009. [xxxvi] Vijay Mahant, “‘Right-to-Try’ Experimental Drugs: An Overview,” Journal of Translational Medicine 18 (June 23, 2020): 253, https://doi.org/10.1186/s12967-020-02427-4. [xxxvii] Michael S. Okun et al., “Deep Brain Stimulation in the Internal Capsule and Nucleus Accumbens Region: Responses Observed during Active and Sham Programming,” Journal of Neurology, Neurosurgery & Psychiatry 78, no. 3 (March 1, 2007): 310–14, https://doi.org/10.1136/jnnp.2006.095315. (shrink)

The author starts from the traditional American notion that technology might offer a way to decrease the horror and suffering of warfare. He points out that historically this assumption is flawed in that past technological advances, from gunpowder weapons to bombers, have only made warfare more--not less--bloody. With a relentless logic, Colonel Dunlap takes to task those who say that the Revolution in Military Affairs has the potential to make war less bloody. He covers the technological landscape from precision-guided (...) munitions and Information Warfare to the use of space for military operations to raise issues that could pose difficult ethical, legal and moral problems for statesmen and soldiers. Some of these conundrums are so confounding that the author could claim that in all humility his only purpose was to raise these issues to prompt debate. But Colonel Dunlap takes the next step to outline several broad thematic avenues that may help us all address the difficult problems that lie ahead. (shrink)

Claims about the transformations enabled by modern science and medicine have been accompanied by an unsettling question in recent years: might the knowledge being produced undermine--rather than further--human and animal well being? On the Dual Uses of Science and Ethics examines the potential for the skills, know-how, information, and techniques associated with modern biology to serve contrasting ends. In recognition of the moral ambiguity of science and technology, each chapter considers steps that might be undertaken to prevent the (...) deliberate spread of disease. Central to achieving this aim is the consideration of what role ethics might serve. To date, the ethical analysis of the themes of this volume has been limited. This book remedies this situation by bringing together contributors from a broad range of backgrounds to address a highly important ethical issue confronting humanity during the 21st century. (shrink)

Definition of the problem Death and suicide wishes of older people represent a relevant and morally challenging issue for nurses. Especially in the context of wishes for assisted suicide, the risk for the development of moral uncertainty or even moral distress grows. As suicide rates and requests for assisted suicide are particularly high among people 65 years of age or older, the topic proves to be particularly relevant to the settings of long-term community and nursing home care. At (...) the same time, this fact underlines the importance of suicide prevention, which has recently been strengthened by the federal government, with the intention of launching a national strategy and a corresponding law. Arguments According to our hypothesis, the situational confrontation of nursing professionals with death and suicide wishes may cause an ethical field of tension between an unprejudiced, open, empathetic and respectful acceptance of death and suicide wishes on the one hand and the goal of suicide prevention on the other. The legal uncertainties in regards to the practice of assisted suicide, which currently prevails in practice, may intensify this risk. International studies point to the potential of moral distress of nurses when confronted with death and suicide wishes. Conclusion These findings and the reference to the current legal uncertainties and framework conditions in the national (German) context underpin the importance of the professional discussion about the topic, the need to sensitise (future) nursing professionals to potential ethical tensions and to enable them to deal with the accompanying moral uncertainty in a professional and competent manner. (shrink)

This book is a collection of original, interdisciplinary essays on the topic of medical error. Given the complexities of understanding, preventing, and responding to medical error in ethically responsible ways, the scope of the book is fairly broad. The contributors include top scholars and practitioners working in bioethics, communication, law, medicine and philosophy. Their contributions examine preventable causes of medical error, disproportionate impacts of errors on vulnerable populations, disclosure and apology after discovering medical errors, and ethical issues arising (...) in specific medical contexts, such as radiation oncology, psychopathy, and palliative care. They also offer practical recommendations for respecting autonomy, distributing burdens and benefits justly, and minimizing injury to patients and other stakeholders. Ethics and Error in Medicine will be of interest to a wide range of researchers, students, and practitioners in bioethics, philosophy, communication studies, law, and medicine who are interested in the ethics of medical error. (shrink)

Machine generated contents note: CHAPTER 1 HEALTH CARE PROFESSIONALS AND HIV: The Duty To WarnI -- CHAPTER 2 EMERGENCY CARE AND HIV: Treatment Policy and -- Pracice17 -- CHAPTER 3 A REVOLUTIONARY POLICY? Mandatory Disclosure of HIV -- Serostaus29 -- CHAPTER 4 MINORS AND HEALTH CARE: The Limits of Consent and -- Confidentiality39 -- CHAPTER 5 THE RIGHTS TO REFUSE AND DEMAND MEDICAL -- TREATMENT: The Bounds ofAutonomy andFutli{y47 -- CHAPTER 6 RELIGIOUS FREEDOM AND THE RIGHT TO REFUSE CARE: -- (...) What Are The Limits?65 -- CHAPTER 7 ASSISTED REPRODUCTIVE TECHNOLOGY: The Business of -- Making Babies 89 -- CHAPTER 8 TWINS AND TRANSPLANTS: Choosing Who Lives 113 -- CHAPTER 9 FREE ABORTION SERVICES AND FETAL TISSUE RESEARCH: -- Freedom of Choice and Coercion123 -- CHAPTER 10 PROPERTY RIGHTS, BODY PARTS, AND REPRODUCTION: -- Who Owns the Human Body? - 139 -- CHAPTER 11 OUTBREAK IN AMERICA: The Policy of Public Verses Private -- Interests 153 -- APPENDIX A CONFIDENTIALITY OF HIV TEST RESULTS: California Health -- and Safety Code Sections 120975 Through 121020169 -- APPENDIX B HEALTH CARE PROFESSIONALS AND HIV: Texas Health and -- Safety Code Section 58.204 175 -- APPENDIX C TARASOFF v, THE REGENTS OF THE UNIVERSITY OF -- CALIFORNIA: Supreme Court of California177 -- APPENDIX D THE RIGHTS OF MINORS TO CONSENT TO HEALTH CARE: -- California Family Code Sections 6903 Through 6929183 -- APPENDIX E FEDERAL DRUG AND ALCOHOL ABUSE CONFIDENTIALITY -- REGULATIONS: Title 42 Code of Federal Regulations Part 2 187 -- APPENDIX F CHILD ABUSE REPORTING LAWS: Caitfornia Penal Code -- Sections 11164 Through 11166 193. (shrink)

Lee emphasizes the need to better understand the moral relationship between researchers and participants connoted by precision medicine, with the framework of “the gift” offering bioethics a...

This book offers a provocative analysis of the neuroscience of morality. Written by three leading scholars of science, medicine, and bioethics, it critiques contemporary neuroscientific claims about individual morality and notions of good and evil. Winner of a 2021 prize from the Expanded Reason Institute, it connects moral philosophy to neoliberal economics and successfully challenges the idea that we can locate morality in the brain. Instead of discovering the source of morality in the brain as they claim to (...) do, the popularizers of contemporary neuroscience are shown to participate in an understanding of human behavior that serves the vested interests of contemporary political economy. Providing evidence that the history of claims about morality and brain function reach back 400 years, the authors locate its genesis in the beginnings of modern philosophy, science, and economics. They further map this trajectory through the economic and moral theories of Francis Bacon, David Hume, Jeremy Bentham, John Stuart Mill, and the Chicago School of Economics to uncover a pervasive colonial anthropology at play in the neuroscience of morality today. The book concludes with a call for a humbler and more constrained neuroscience, informed by a more robust human anthropology that embraces the nobility, beauty, frailties, and flaws in being human. (shrink)

This textbook develops the issue of ethics to a philosophical level complex enough to be applicable to students of philosophy and applied ethics courses. It is the first book to address clinical problems from a classical perspective. This title available in eBook format. Click here for more information . Visit our eBookstore at: www.ebookstore.tandf.co.uk.

Moral bioenhancement presents the possibility of enhancing morally desirable emotions and dispositions. While some scholars have proposed that moral bioenhancement can produce virtue, we argue that within a virtue ethics framework moral bioenhancement cannot reliably produce virtue. Moreover, on a virtue ethics framework, the pursuit of moral bioenhancement carries moral risks. To make this argument, we consider three aspects of virtue—its motivational, rational, and behavioral components. In order to be virtuous, we argue, a person must (...) (i) take pleasure in doing the right thing and have the correct motivational attitudes; (ii) reason correctly about what is called for in a particular ethical dilemma; and (iii) intentionally and continuously practice and cultivate virtues. These dimensions of morality—in short: precisely those emphasized in a virtue ethics framework—cannot be consistently or reliably met using existing moral bioenhancement technology. (shrink)

The article considers the issues of modern German political philosophy in accordance with its formation, institutionalization and development. Germany’s political philosophy is analyzed in terms of its interaction with social and practical philosophy. The text states that political philoso- phy belongs to both social philosophy and political science. As a political theory, it is a compo- nent of social theories institutionalized in the modern era. As a political philosophy, it appears as a metatheory of political theory. Political philosophy is also (...) part of practical philosophy, exploring the problems of interaction between ethics and politics and the moral reclamation of the political system of modern society. These issues are themed in the context of the institution- alization of this discipline in the early twentieth century, its transformation into a political reli- gion during National Socialism, the revival after World War II, as well as actualization in such areas of socio-humanitarian sciences as discourse philosophy, functional-system theory of so- ciety, etc. according to the political situation of modern Germany. (shrink)

Introduction TEMPE (Teaching Ethics: Material for Practitioner Education) is a two-year research project (2000-2002) funded by the European Commission ...

This volume assesses the ethical, quantitative, and qualitative questions posed by the current financing of biomedical research.

Ethics boards have become obligatory passage points in today's medical science, and we forget how novel they really are. The use of humans in experiments is an age-old practice that records show goes back to at least the third century BC and, since the early modern period, as a practice it has become increasingly popular. Yet, in most countries around the world, hardly any formal checks and balances existed to govern the communal oversight of experiments involving human subjects until at (...) least the 1960s. Ethics by Committee traces the rise of ethics boards for human experimentation in the second half of the twentieth century. Using the Netherlands as a case-study, Noortje Jacobs shows how the authority of physicians to make decisions about clinical research gave way in most developed nations to formal mechanisms of communal decision-making that served to regiment the behavior of individual researchers. This historically unprecedented change in scientific governance came out of a growing international wariness of medical research in the decades after World War II. Research ethics committees were originally intended not only to make human experimentation more ethical but also to raise its epistemic quality. By examining complex negotiations over the appropriate governance of human subjects research, Ethics by Committee advances our understanding not only of the history of research ethics and the randomized controlled trial but also, more broadly, of how liberal democracies in the late twentieth century have sought to resolve public concerns over charged issues in medicine and science. (shrink)

Books have their origins in conversations and seek to extend and expand those conversations over time and with different audiences. The conversations that have culminated in this book were initially stimulated through a research project at The Hastings Center on the role of religious voices in the professional fields of bioethical inquiry. Those professional conversations have continued throughout my academic career as a member of various institutional ethics committees, organizational ethics task forces, and in local, state, and national public policy (...) settings. The professional context of bioethics conversations can sometimes miss the richness of conversations that occur in the classroom and with various communities, including family members, friends, and religious and civic communities. These conversations provide an experiential depth, a groundedness in the lives and stories of persons, which augments and corrects the professionalized perspectives. I have been particularly fortunate and appreciative of opportunities to bridge the academic and professional with the personalized and communal through conversations about the ethical commitments and moral culture cultivated by The Church of Jesus Christ of Latter-day Saints (LDS or Mormon). I was invited to develop an overview essay on "Bioethics in Mormonism" for the professional reference work, Encyclopedia of Bioethics (3rd ed., 2004), and some years later received my first invitation to make a presentation on "LDS Ethics" in an academic setting at the University of Virginia. This book is the outgrowth of these many conversations and seeks to advance my communal bridging. My aim in this book is to begin bridging these various intersections between the LDS religious community and its moral culture, the professional fields of bioethics, and practical decision-making. This work seeks to be a catalyst for expanding discourse within the interdisciplinary field of Mormon studies to include ethics and bioethics. Ethics has not been a well-developed area in Mormon studies, in contrast to studies in LDS history, theology, or literature. To remedy this oversight, I present a substantive interpretation of the sources, theological background, and moral principles of LDS ethics. The historical narratives and conceptual intertwining I offer of both bioethics and of LDS moral culture is intended to complement and expand the realm of Mormon studies. A further objective is to create opportunities for reciprocal dialogues between the bioethics community and LDS scholarship. This conversation has yet to occur within academic disciplines, professional communities, or in public policy deliberations. My exposition, analysis, and critiques will intertwine and contextualize LDS moral values and health care practices within the ethical inquiry undertaken in the broader professional scholarship of bioethics. My arguments will disclose some points of common ground as well as areas of divergence towards the end of establishing the LDS faith tradition as a community of moral discourse for the bioethics field and the healing professions (medicine, nursing, pharmacy, etc.) it informs. My claim is that given its emerging cultural prominence, LDS ethical scholarship should engage in bioethical literacy and bioethics should be LDS-literate. I am also engaged in an effort to initiate more reflective dialogues regarding LDS ethics and moral culture among LDS scholars, LDS health care professionals, and the interested general LDS reader. The focus of the book on the interrelationship of religion, ethics, medicine, and health care should present for these various audiences new opportunities for mindful reflection and creative scholarship on the ethical implications of faith commitments, the responsibilities of the healing professions, and religious dimensions of public policy and public bioethics. A religious community that is formed through narratives and practices of covenantal commitments of love of neighbor needs to have a robust discourse about its ethical character. I have understood my scholarship in biomedical ethics and in religious ethics through a linking metaphor of my moral culture, of medicine, and the law, of bearing witness. The witness offers moral realities, moral truths about the way things are, vocalizes and embodies moral experience, and prophetically critiques the hypocrisies of the powerful and their oppression of the vulnerable by offering a new story, a re-storying, of tradition and conventional practice. (shrink)

Coercive Care: The Ethics of Choice in Health and Medicine asks probing and challenging questions regarding the use of coercion in health care and social services. This book combines philosophical analysis with comparative studies of social policy and law in a large number of industrialized countries and proposes an ideal of judicial security on a global scale.

"The Ethics of Fetal Research" distinguishes between the legal and ethical questions raised by experimentation on still-living human fetuses.

This book provides an analysis of the debate surrounding cultural diversity, and attempts to reconcile the seemingly opposing views of "ethical imperialism," the belief that each individual is entitled to fundamental human rights, and cultural relativism, the belief that ethics must be relative to particular cultures and societies. The author examines the role of cultural tradition, often used as a defense against critical ethical judgments. Key issues in health and medicine are explored in the context of cultural (...) diversity: the physician-patient relationship, disclosing a diagnosis of a fatal illness, informed consent, brain death and organ transplantation, rituals surrounding birth and death, female genital mutilation, sex selection of offspring, fertility regulation, and biomedical research involving human subjects. Among the conclusions the author reaches are that ethical universals exist, but must not be confused with ethical absolutes. The existence of ethical universals is compatible with a variety of culturally relative interpretations, and some rights related to medicine and health care should be considered human rights. Illustrative examples are drawn from the author's experiences serving on international ethical review committees and her travels to countries in Africa, Asia, and Latin America, where she conducted educational workshops and carried out out her own research. (shrink)

What are the moral challenges that confront doctors as they manage healthcare institutions? How do we build trust in medical organisations? How do we conceptualize moral action? Based on accounts given by senior doctors from organisations throughout the UK, this book discusses the issues medical leaders find most troubling and identifies the moral tensions they face. Moral Leadership in Medicine examines in detail how doctors protect patients' interests, implement morally controversial change, manage colleagues in difficulty (...) and rebuild trust after serious medical harm. The book discusses how leaders develop moral narratives to make sense of these situations, how they behave while balancing conflicting moral goals and how they influence those around them to do the right thing in difficult circumstances. Based on empirical ethical analysis, this volume is essential reading for clinicians in leadership roles and students and academics in the fields of healthcare management, medical law and healthcare ethics"--Provided by publisher. (shrink)

On the powerful qualities view, every fundamental property is both dispositional and qualitative. Identity theory is the standard account of the view, which makes the stronger claim that a property’s dispositionality and qualitativity are identical to each other, and identical to the property itself. Recent defences of the powerful qualities view have involved novel theories of powerful qualities which are not also variants of identity theory. Giannotti (Erkenntnis 86:603–621, 2021a) has suggested a novel theory of his own, the dual aspect (...) account, which makes use of a particular notion of aspects. For Giannotti, dispositionality and qualitativity are each an aspect of a property, and an aspect is a property’s way of being. The importance of aspects is twofold. Firstly, by introducing aspects to identity theory, the theory becomes more precise. Secondly, aspects allow for a novel theory of powerful qualities, the dual aspect account, which maintains that dispositionality and qualitativity are aspects, but rejects the identity claim. Giannotti’s aim is to show that even if identity theory is false, the dual aspect account remains an available theory for advocates of powerful qualities. This paper will be a critical examination of Giannotti’s ideas. Firstly, I will clarify Giannotti’s notion of aspects, explaining how it involves a misunderstanding of supervenience, and why it does not offer the advantages that he claims it does. Secondly, in light of my discussion of aspects, I will argue that the dual aspect account lacks relative advantages over the compound view of powerful qualities. (shrink)

: Written to help the practicing health professional and students in the health professions decide whether to act on the reports of research projects that affect their practice, the book is geared to the professional consumer of research, not the performer of research. Discusses how to sort out principal types of clinical investigations, describe their strengths and weaknesses, list the main difficulties likely to occur with each, and deal with informed consent, vulnerable subjects, patients' rights, professional responsibility, and other (...) class='Hi'>ethical concerns. (shrink)