Research and clinical trial development for rare diseases pose unique bioethical challenges. Much of the literature on rare diseases focuses on patient advocacy and drug development to manage or cu...

This article, based on a case study, examines issues of confidentiality and family impact in a diagnosis of Huntington's disease. Genetic-based illness transcends individualistic models of patient autonomy because it also involves other family members, requiring a new approach to patient confidentiality.

Huntington ; argues that recent commentators err in attributing to Nāgārjuna and Candrakīrti a commitment to rationality and to the use of argument, and that these commentators do violence to the Madhyamaka project by using rational reconstruction in their interpretation of Nāgārjuna’s and Candrakīrti’s texts. Huntington argues instead that mādhyamikas reject reasoning, distrust logic and do not offer arguments. He also argues that interpreters ought to recuse themselves from argument in order to be faithful to these texts. I (...) demonstrate that he is wrong in all respects: Nāgārjuna and Candrakīrti deploy arguments, take themselves to do so, and even if they did not, we would be wise to do so in commenting on their texts. (shrink)

This chapter considers ethical issues involved in genetic testing and screening for susceptibility to various forms of cancer.

BackgroundHuntington’s disease has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive. Little is known about the perspectives of HD patients on their AED.AimTo gain insight into patients’ views on and attitudes towards their AED, and changes over time.MethodsA longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients who either had an AED or (...) were thinking about drawing it up participated in this study.ResultsWe identified two themes that characterize patients’ perspectives on their AEDs: general character of the AED; uncertainty around their AED. Ad The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED.ConclusionHD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care. (shrink)

Variant Creutzfeldt–Jakob disease is a fatal, transmissible, neurodegenerative disorder for which there is currently no effective treatment. vCJD arose from the zoonotic spread of bovine spongiform encephalopathy. There is now compelling evidence for human to human transmission through blood transfusions from presymptomatic carriers and experts are warning that the real epidemic may be yet to come. Imperatives exist for the development of reliable, non-invasive presymptomatic diagnostic tests. Research into such tests is well advanced. In this article the ethical implications of (...) the availability of these tests are elaborated and comparisons drawn with predictive genetic testing for Huntington’s disease and screening for HIV. Paramount to considerations is the issue of whom to test, weighing up respect for personal autonomy against obligations to benefit and protect society. A paradigm is proposed similar to that used for HIV screening but with unique features: compulsory testing of all blood/organ donors and individuals undergoing surgery or invasive procedures who have a significant risk of disease transmission. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Religion, the Globalization of War, and Restorative JusticeNathan TierneyAs the pace of globalization increases, the world's religions find themselves in a perilous dilemma that they have yet to resolve in either practical or conceptual terms. On the one hand, the globalization of markets exerts a powerful pressure toward consumerist and materialist values, which undermine and undercut religious perspectives and sensibilities. On the other hand, the globalization of war heightens (...) the intensity of these religious perspectives and sensibilities, and distorts them in the direction of violence and religious extremism. This dilemma plays itself out in different ways in the developed and developing world, but, as the term "globalization" indicates, it is a problem for all of us. Governments, in developing countries especially, often find themselves forced to choose between one horn of the dilemma or the other, with often disastrous results as they take one or the other side in a "West versus the rest" scenario. In the long run, the only viable solution is one that addresses both horns of the dilemma at the same time, and this is possible only if, in turn, religions themselves become truly global. This will require a large-scale and focused cooperative effort in which the religions of the world actively and jointly engage with both problems, working with governments, NGOs, religious communities, and interfaith groups to harmonize religious life with economics and to promote a culture of peace and justice.Because "globalization" is a familiar term in relation to markets, I'll begin by clarifying what I mean by the globalization of war. There are two main aspects to this phenomenon. First, the term refers to a specific transformation in the nature, purposes, and conditions of warfare brought about by the forces of globalization. By globalization I mean the growing trend of the world's cultural, economic, and political forces to bypass national borders and operate on a world scale. This process creates new possibilities for both integration and conflict. When that conflict passes beyond the possibility of diplomatic negotiation, we have the conditions for globalized war. Globalized war is not necessarily world war. It can be relatively local in its sphere of combat; for example, the U.S. invasion of Afghanistan was a collective response to a worldwide threat of terrorism. What makes it a globalized war, as distinct from international war, is the global nature of the forces that produced it and [End Page 79] are affected by it. Globalized war in this sense has come only lately onto the scene, but its scale and impact is likely to grow in the coming century.The second aspect of the globalization of war is the tendency of conflict to mutate beyond the interests and concerns of nation-states and be taken up by broader civilizational units, even if they were not originally a response to global pressures. The most likely trajectory for this mutation has been well described by Samuel P. Huntington in his influential article "The Clash of Civilizations" (1993) and his book-length treatment of the same subject (1997). Huntington argues that the fault lines of conflict will not be primarily ideological or economic but cultural, where "cultural" is to be understood at its broadest level—the level of civilizations. He divides the world into seven or eight competing civilizations: Western, Sinic, Japanese, Hindu, Islamic, Orthodox, Latin American, and possibly African. Societies sharing cultural affinities will cooperate with one another, and the attempt by the West to universalize its dominant version of consumer capitalism and liberal democracy will be resisted in an increasingly determined way—eventually to the point of outright war: "the next world war, if there is one, will be a war between civilizations."1In Huntington's analysis, then, the globalization of war refers to a coming clash of civilizations. He believes that religion will play a central role in this clash as the focal point of civilizations: "Civilizations are differentiated from each other by history, language, culture tradition and, most important, religion."2 While Western civilization has experienced several decades of decline and decay, in both its cultural unity and its sense of identity, other civilizations have grown both in economic terms and... (shrink)

Flap EndoNuclease‐1 (FEN‐1) is a multifunctional and structure‐specific nuclease involved in nucleic acid processing pathways. It plays a critical role in maintaining human genome stability through RNA primer removal, long‐patch base excision repair and resolution of dinucleotide and trinucleotide repeat secondary structures. In addition to its flap endonuclease (FEN) and nick exonuclease (EXO) activities, a new gap endonuclease (GEN) activity has been characterized. This activity may be important in apoptotic DNA fragmentation and in resolving stalled DNA replication forks. The multiple (...) functions of FEN‐1 are regulated via several means, including formation of complexes with different protein partners, nuclear localization in response to cell cycle or DNA damage and post‐translational modifications. Its functional deficiency is predicted to cause genetic diseases, including Huntington's disease, myotonic dystrophy and cancers. This review summarizes the knowledge gained through efforts in the past decade to define its structural elements for specific activities and possible pathological consequences of altered functions of this multirole player. BioEssays 27:717–729, 2005. © 2005 Wiley Periodicals, Inc. (shrink)

Brian Skyrms (1987, 1990, 1993, 1997) has discussed the role of dynamic coherence arguments in the theory of personal or subjective probability. In particular, Skryms (1997) both reviews and discusses the utility of martingale arguments in establishing the convergence of beliefs within the context of radical probabilism. The classical martingale converence theorem, however, assumes the countable additivity of the underlying probability measure; an assumption rejected by some subjectivists such as Bruno de Finetti (see, e.g., de Finetti 1930 and 1972). This (...) brief note has a very modest goal: to briefly consider the extent to which Skyrms’s argument can be extended to the finitely additive case. (shrink)

S. L. Hurley; VIII*—Kant on Spontaneity and the Myth of the Giving, Proceedings of the Aristotelian Society, Volume 94, Issue 1, 1 June 1994, Pages 137–164, htt.

Küreselleşme, uluslararası politika ve terör üzerine yapılmış bilimsel bir değerlendirme.

Many religious people are alarmed about features of the current age - violence in the media, a pervasive hedonism, a marginalization of religion, and widespread abortion. These concerns influence politics, but just as there should be a separation between church and state, so should there be a balance between religious commitments and secular arguments calling for social reforms. Robert Audi offers a principle of secular rationale, which does not exclude religious grounds for action but which rules out restricting freedom except (...) on grounds that any rational citizen would accept. The book describes the essential commitments of free democracy, explains how religious and secular moral considerations can be integrated to facilitate co-operation in a world of religious pluralism, and proposes ideals of civic virtue that express the mutual respect on which democracy depends. Audi offers a balanced and sophisticated treatment of the relations between religion and politics in a modern, secular society. (shrink)

Moral Case Deliberations are reflective dialogues with a group of participants on their own moral dilemmas. Although MCD is successful as clinical ethics support, it also has limitations. 1. Lessons learned from individual MCDs are not shared in order to be used in other contexts 2. Moral learning stays limited to the participants of the MCD; 3. MCD requires quite some organisational effort, 4. MCD deals with one individual concrete case. It does not address other, similar cases. These limitations warrant (...) research into complementary ways of providing CES to healthcare professionals. Our research objective was therefore to develop a low threshold CES tool based on a series of MCDs on autonomy in long-term care. We used a qualitative research design in which we analyzed the process and content of a series of MCDs, combined with reflections on the theoretical background of MCD. In total 28 MCDs were analyzed by means of a thematic content analysis. In various rounds of development, the results of the analysis were combined with theoretical reflections on CES. Consequently, the tool was evaluated in three focus groups and adjusted. The CES tool, called ‘moral compass’, guides the users through a series of six subsequent questions in order to methodically reflect on their concrete moral dilemma, in the form of a booklet of 23 pages. It combines a methodical element that encourages and structures a reflection process with a substantive element, including norms, values, options, strategies, and insights regarding dealing with client autonomy. By using data from a series of MCDs, combined with theoretical reflections on MCD, ethics support and moral learning, we developed a thematic, low-threshold CES tool that supports healthcare professionals in daily practice in dealing with moral questions regarding client autonomy. It integrates examples and insights from earlier MCDs on the same topic. The moral compass is not a replacement of, but can be used complementary to MCD. The feasibility and impact of the moral compass need to be investigated in an evaluative follow-up study. The methodology presented in this paper may be used to develop moral compasses on different topics in various healthcare organizations. (shrink)

Objective: To identify factors that predict physicians’ intent to comply with the American Medical Association’s ethical guidelines on gifts from the pharmaceutical industry.Methods: A survey was designed and mailed in June 2004 to a random sample of 850 physicians in Florida, USA, excluding physicians with inactive licences, incomplete addresses, addresses in other states and pretest participants. Factor analysis extracted six factors: attitude towards following the guidelines, subjective norms , facilitating conditions , profession-specific precedents , individual-specific precedents and intent. Multivariate regression (...) modelling was conducted.Results: Surveys were received from 213 physicians representing all specialties, with a net response rate of 25.5%. 62% of respondents were aware of the guidelines; 50% had read them. 48% thought that following the guidelines would increase physicians’ credibility and professional image; 68% agreed that it was important to do so. Intent to comply was positively associated with attitude, subjective norms, facilitators and sponsorship of continuing medical education events, while individual-specific precedents had a negative relationship with intent to comply. Predictors of intent were attitude, subjective norms, the interaction term , sponsorship of CME events and individual-specific precedents.Conclusions: Physicians are more likely to follow the AMA guidelines if they have positive attitudes towards the guidelines, greater subjective norms, fewer expectations of CME sponsorship and fewer individual-specific precedents. Physicians believing that important individuals or organisations expect them to comply with the guidelines are more likely to express intent, despite having fewer beliefs that positive outcomes would result through compliance. (shrink)

Authority qua empowerment is the weak reading of authority in Hans Kelsen's writings. On the one hand, this reading appears to be unresponsive to the problem of authority as we know it from the tradition. On the other hand, it squares with legal positivism. Is Kelsen a legal positivist?Not without qualification. For he defends a normativity thesis along with the separation thesis, and it is at any rate arguable that the normativity thesis mandates a stronger reading of authority than that (...) modelled on empowerment. I offer, in the paper, a prima facie case on behalf of a stronger reading of authority in Kelsen. I go on to argue, however, that the textual evidence weighs heavily in favour of the weak reading. Both nomostatics and nomodynamics are pervasive points of view in the Pure Theory of Law, and both reflect species of empowerment as the endpoint of Kelsen's reconstructions. (shrink)

This paper expands the definition of gray-marketing to include some ethically problematic marketing activities and techniques used in personal selling in China. Based on this, a conceptual model of gray-marketing for a particular type of selling in which both the sellers and the buyers exhibit problematic ethics in an exchange and the associated hypotheses are developed and tested. The findings show that, first, the respondents have different ethical evaluations of different marketing practices used in personal selling such as giving and (...) accepting gifts, buying and accepting meals, and offering and accepting kickbacks. Some of these practices may not be considered unethical. Second, in terms of ethical assessment, gray-marketing practiced by buying agents is more unacceptable than when practiced by sales agents. Third, a person's ethical evaluation of gray-marketing behavior, empathy for gray-marketing, and belief that gray-marketing has serious consequences, significantly affects his inclination to use gray-marketing. This paper concludes with a discussion of some possible applications of our research findings. (shrink)

We consider language models for the Lambek calculus that allow empty antecedents and enrich them with constants for the empty language and for the language containing only the empty word. No complete calculi are known with respect to these semantics, and in this paper we consider several trivalent systems that arise as fragments of these models? logics.

Background: In Switzerland, non-medical right-to-die organisations such as Exit Deutsche Schweiz and Dignitas offer suicide assistance to members suffering from incurable diseases.Objectives: First, to determine whether differences exist between the members who received assistance in suicide from Exit Deutsche Schweiz and Dignitas. Second, to investigate whether the practices of Exit Deutsche Schweiz have changed since the 1990s.Methods: This study analysed all cases of assisted suicide facilitated by Exit Deutsche Schweiz and Dignitas between 2001 and 2004 and investigated by the University (...) of Zurich’s Institute of Legal Medicine. Furthermore, data from the Exit Deutsche Schweiz study which investigated all cases of assisted suicide during the period 1990–2000 were compared with the data of the present study.Results: More women than men were assisted in both organisations. Dignitas provided more assistance to non-residents, younger persons : D: 64.5 ; E: 76.6 ; p = 0.001), and people suffering from fatal diseases such as multiple sclerosis and amyotrophic lateral sclerosis. Lethal medications were more often taken orally in cases assisted by Dignitas. The number of women and the proportion of older people suffering from non-fatal diseases among suicides assisted by Exit Deutsche Schweiz has increased since the 1990s : 69.3 to 76.9, p = 0.000), non-fatal diseases: 22% to 34%, p = 0.026).Conclusions: Weariness of life rather than a fatal or hopeless medical condition may be a more common reason for older members of Exit Deutsche Schweiz to commit suicide. The strong over-representation of women in both Exit Deutsche Schweiz and Dignitas suicides is an important phenomenon so far largely overlooked and in need of further study. (shrink)

Sven Erik Nordenbo; Bildung and the Thinking of Bildung, Journal of Philosophy of Education, Volume 36, Issue 3, 16 December 2002, Pages 341–352, https://doi.or.

Among various cases that equally admit of evidentialist reasoning, the supposedly evidentialist solution has varying degrees of intuitive attractiveness. I suggest that cooperative reasoning may account for the appeal of apparently evidentialist behavior in the cases in which it is intuitively attractive, while the inapplicability of cooperative reasoning may account for the unattractiveness of evidentialist behaviour in other cases. A collective causal power with respect to agreed outcomes, not evidentialist reasoning, makes cooperation attractive in the Prisoners' Dilemma. And a natural (...) though unwarranted assumption of such a power may account for the intuitive appeal of the one-box response in Newcomb's Problem. (shrink)

“Doing Gender,” Candance West and Don Zimmerman’s famous 1987 article, has become a folk concept—a trope or commonsense resource within the sociology of gender. Yet at the same time, most gender scholars overlook its ethnomethodological premise, visible in both poststructuralist misunderstandings of its argument outside the discipline of sociology and what I term a realist misunderstanding of it in the study of structures and identities within the discipline. Reading West and Zimmerman queerly while clarifying ethnomethodology’s ontology, I refocus attention for (...) critical scholarship on ethnomethodology’s analytic sensibilities for research on gender, race, and sexuality, among other embodiments. Specifically, ethnomethodology reframes a vision of actors as relational, practical actors; repositions gender as accountable, jointly produced social relations, not individual identity; and foregrounds resistance in addition to conformity. Hence, my gender is not mine; it is ours. Ethnomethodology’s ontological shift in temporality to reality-in-production enables interpretive-materialism: a queer, anti-racist, intersectional sociology that is future-facing and in motion. (shrink)

It is widely accepted now that a patient's right to refuse treatment extends to circumstances in which the exercise of that right may lead to the patient's death. However, it is also often effectively assumed, without argument, that this implies a patient's right to request another agent to intervene so as to bring about his or her death, in a way which would render that agent guilty of murder in the absence of such a request. But the right to refuse (...) treatment can, logically, have no such implication, and the mistaken supposition that it does conflates a right to die with a right to be killed. Confusion over this issue is brought out by an examination of conflicting opinion concerning the permissible termination of ventilation for mentally competent patients. A wider lesson may be drawn regarding the need for the ethical assessment of new forms of life-sustaining medical technology. (shrink)