Governments are increasingly inviting patient organizations to participate in healthcare policymaking. By inviting POs that claim to represent patients, representation comes into being. However, little is known about the circumstances under which governments accept POs as patient representatives. Based on the analysis of relevant legislation, this article investigates the criteria that self-help organizations, a special type of PO, must fulfil in order to be accepted as patient representatives by governments in Austria and Germany. Thereby, it aims to contribute to the (...) discussion on the role of governments in steering SHOs. There are different degrees of regulation. Governments in both countries not only formulate explicit criteria for SHOs with respect to patient representation but also guide SHOs representing patients through implicit criteria for associations. We discuss the findings against concepts of responsiveness, authorization, and accountability. Our findings indicate that governmental steering is not negative per se as indicated by previous research but—depending on legislative criteria—can promote transparency and democratic quality in patient representation. (shrink)

Patient organizations increasingly play an important role in health care decision-making in Western countries. The Netherlands is one of the countries where this trend has gone furthest. In the literature some problems are identified, such as instrumental use of patient organizations by care providers, health insurers and the pharmaceutical industry. To strengthen the position of patient organizations government funding is often recommended as a solution. In this paper we analyze the ties between Dutch government and Dutch patient organizations to learn (...) more about the effects of such a relationship between government and this part of civil society. Our study is based on official government documents and existing empirical research on patient organizations. We found that government influence on patient organizations has become quite substantial with government influencing the organizational structure of patient organizations, the activities these organizations perform and even their ideology. Financing patient organizations offers the government an important means to hold them accountable. Although the ties between patient organizations and the government enable the former to play a role that can be valued as positive by both parties, we argue that they raise problems as well which warrant a discussion on how much government influence on civil society is acceptable. (shrink)

Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical (...) evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered. (shrink)

In many countries patient involvement is high on the healthcare policy agenda, which includes patient representation in collective decision-making. Patient organizations are generally considered to be important representatives of patients. Other actors also claim to represent patients in decision-making, such as politicians, healthcare professionals, and client advisory councils. In this paper we take a broad view of patient representation, examining all the actors claiming to represent patients in the Dutch debate on the decentralization of care. We conclude that variety in (...) forms of representation could help do justice to the variety of patient preferences. In addition we conclude that in order to ensure the democratic quality of patient representation, actors making representative claims have to reflect on how their claims relate to each other and how they can ensure authorization and accountability in the representative relationship with those they claim to represent. (shrink)

In many countries patient involvement is high on the healthcare policy agenda, which includes patient representation in collective decision-making. Patient organizations are generally considered to be important representatives of patients. Other actors also claim to represent patients in decision-making, such as politicians, healthcare professionals, and client advisory councils. In this paper we take a broad view of patient representation, examining all the actors claiming to represent patients in the Dutch debate on the decentralization of care. We conclude that variety in (...) forms of representation could help do justice to the variety of patient preferences. In addition we conclude that in order to ensure the democratic quality of patient representation, actors making representative claims have to reflect on how their claims relate to each other and how they can ensure authorization and accountability in the representative relationship with those they claim to represent. (shrink)

Patient organizations increasingly play an important role in health care decision-making in Western countries. The Netherlands is one of the countries where this trend has gone furthest. In the literature some problems are identified, such as instrumental use of patient organizations by care providers, health insurers and the pharmaceutical industry. To strengthen the position of patient organizations government funding is often recommended as a solution. In this paper we analyze the ties between Dutch government and Dutch patient organizations to learn (...) more about the effects of such a relationship between government and this part of civil society. Our study is based on official government documents and existing empirical research on patient organizations. We found that government influence on patient organizations has become quite substantial with government influencing the organizational structure of patient organizations, the activities these organizations perform and even their ideology. Financing patient organizations offers the government an important means to hold them accountable. Although the ties between patient organizations and the government enable the former to play a role that can be valued as positive by both parties, we argue that they raise problems as well which warrant a discussion on how much government influence on civil society is acceptable. (shrink)

Governments are increasingly inviting patient organizations to participate in healthcare policymaking. By inviting POs that claim to represent patients, representation comes into being. However, little is known about the circumstances under which governments accept POs as patient representatives. Based on the analysis of relevant legislation, this article investigates the criteria that self-help organizations, a special type of PO, must fulfil in order to be accepted as patient representatives by governments in Austria and Germany. Thereby, it aims to contribute to the (...) discussion on the role of governments in steering SHOs. There are different degrees of regulation. Governments in both countries not only formulate explicit criteria for SHOs with respect to patient representation but also guide SHOs representing patients through implicit criteria for associations. We discuss the findings against concepts of responsiveness, authorization, and accountability. Our findings indicate that governmental steering is not negative per se as indicated by previous research but—depending on legislative criteria—can promote transparency and democratic quality in patient representation. (shrink)

The behavior of some nightlife-setting patrons would be unacceptable in workplaces or public settings and could cause distress to other patrons. This quantitative study determined 381 young Australian’s descriptive and personal norms regarding four types of sexual behavior. Participants’ personal norms were that these behaviors are wrong, but they reported that the behaviors are common in a nightlife setting. Behaviors such as these could theoretically be prevented by modifying patrons’ descriptive norms with evidence that their beliefs are contrary to individuals’ (...) personal norms of acceptable behavior in nightlife settings. (shrink)

The article describes the evolution of Ockham's theory of mental language and its impact on three of his dominican contemporaries at oxford: Hugh Lawton, William Crathorn and Robert Holcot, and its impact at Paris on the works of Gregory of Rimini and Pierre d'Ailly. Hugh Lawton's critical response to Ockham relied on a liar-like paradox to show that mental language would preclude the ability to lie. Crathorn devised an alternative to Ockham's theory in reaction, whereas Holcot defended Ockham's views. At (...) Paris, the debate suggested a solution to the liar paradox to Gregory of Rimini. (shrink)

The form of Western mainstream film is the crux of its ideological efficiency: by using established formal techniques, films ensure audiences un- derstand that aesthetic decisions support and clarify the narrative to ensure maximum spectatorial satisfaction. However, some films exploit their formal aesthetics in order to prevent clarification, thwarting satisfaction in favour of viewing practices that can be considered perverse in that they withhold, suspend or obstruct immediate pleasure. Contemporary Western filmmaking in the mid-1990s witnessed the emergence of a distinct (...) group of filmmakers and films that, in the popular discourse of cinematic criticism, were together coded as “difficult” or “perverse.” These films were, as a result of the characteristics we identify below, situated obliquely in relation to the larger economic and artistic struc- tures of a commercially oriented “mainstream” cinema. Included in this new form of cinematic production were films from directors such as Tim Burton: Edward Scissorhands ; David Cronenberg: eXistenZ ; David Fincher: Se7en ; Peter Greenaway: The Baby of Maçon ; David Lynch: Lost Highway ; Quentin Tarantino: Pulp Fiction and Lars von Trier: Breaking the Waves . Whilst Western cinema as a whole has a long history of exploring “difficult” or “perverse” material within the overt or covert content of narrative, plot and story, such films demonstrate a particular relationship between the content being explored and the specific formal characteristics utilised in the delivery of that content. Thus where previous examples would utilise standardised formal techniques as a way of both delivering and containing the difficult or objectionable material, the films instead offer instances where the material of the narrative content seems to bleed backwards, affecting the form and rendering the very materiality of the film itself suspect and problematic. (shrink)

The main purpose of this study was to map school leaders? perceptions concerning the cooperation of the leadership team, the distribution of leadership functions and participative decision?making, and to asses their relative weight in terms of predicting school leaders? job satisfaction. Also, the effect of demographical and structural school variables (i.e. seniority, job experience, school size, size of the leadership team, school type) on school leaders? job satisfaction was examined. A sample of 130 school leaders of 46 large secondary schools (...) completed a self?report questionnaire. The study results indicated that school leaders are highly satisfied with their job. Multiple regression analysis revealed that job satisfaction was significantly related to the cooperation of the leadership team and the school type. The amount of formal distribution of leadership functions and participative decision?making of teachers in the school policy did not have a significant influence on school leaders? job satisfaction. (shrink)

Originally published in 1773 in two volumes, and now reissued here together in one, this work by the writer Hester Chapone, a renowned proponent of female education, contains advice delivered in the form of letters to her niece. The first volume deals primarily with matters of religion and morality, while the second volume addresses questions of behaviour and schooling. Unusually for self-improvement books of this era, Chapone recommends that a young woman should have a rigorous education in a wide (...) variety of subjects, including ancient history and geography, as well as instruction in ladylike deportment and mastery of household matters. She exhorts young ladies to avoid vanity and other vices through devoted study of scripture, and writes of the importance of choosing worthy and sensible friends who can be trusted to offer good advice. Chapone's posthumously published works, in two volumes, are also reissued in this series. (shrink)

Scholars have explored the influence of the field of cybernetics on scientific thought and disciplines. However, from the inception of the field, ‘‘cyberneticians’’ had explicitly envisioned applications reaching beyond the purview of scientific disciplines; cybernetics was remarkable for its portability and potential application in a wide variety of contexts. This article explores connections between cybernetics and experimental music from 1950-1980, which was a period of experimentation with electronic techniques in recording, composition, and sound production and manipulation. Examples include musicians, engineers, (...) instrument builders, composers, and scientists in collaboration with musicians who invoked cybernetic themes in their work. These uses of cybernetics were more diverse than accounts of cybernetics within the sciences suggest, presenting a major difficulty in addressing cybernetics as a homogeneous or monolithic discourse. In particular, cybernetic discourse in music often exhibited themes of openness and indeterminacy, rather than the ‘‘command and control’’ of the ‘‘closed world.’’. (shrink)

Amsterdam University Press is a leading publisher of academic books, journals and textbooks in the Humanities and Social Sciences. Our aim is to make current research available to scholars, students, innovators, and the general public. AUP stands for scholarly excellence, global presence, and engagement with the international academic community.

While the bioethics literature demonstrates that the field has spent substantial time and thought over the last four decades on the goals, methods, and desired outcomes for service and training in bioethics, there has been less progress defining the nature and goals of bioethics research and scholarship. This gap makes it difficult both to describe the breadth and depth of these areas of bioethics and, importantly, to gauge their success. However, the gap also presents us with an opportunity to define (...) this scope of work for ourselves and to help shape the broader conversation about the impact of academic research. Because of growing constraints on academic funding, researchers and scholars in many fields are being asked to demonstrate and also forecast the value and impact of their work. To do that, and also to satisfy ourselves that our work has meaningful effect, we must understand how our work can motivate change and how that change can be meaningfully measured. In a field as diverse as bioethics, the pathways to and metrics of change will likewise be diverse. It is therefore critical that any assessment of the impact of bioethics research and scholarship be informed by an understanding of the nature of the work, its goals, and how those goals can and ought to be furthered. In this paper, we propose a conceptual model that connects individual bioethics projects to the broader goals of scholarship, describing the translation of research and scholarly output into changes in thinking, practice, and policy. One of the key implications of the model is that impact in bioethics is generally the result of a collection of projects rather than of any single piece of research or scholarship. Our goal is to lay the groundwork for a thoroughgoing conversation about bioethics research and scholarship that will advance and shape the important conversation about their impact. (shrink)

This CQ department is dedicated to bringing noted bioethicsts together in order to debate some of the most perplexing contemporary bioethics issues. You are encouraged to contact department editor, D. Micah Hester, UAMS/Humanities, 4301 W. Markham St. #646, Little Rock, AR 72205, with any suggestions for debate topics and interlocutors you would like to see published herein.

This CQ department is dedicated to bringing noted bioethicists together in order to debate some of the most perplexing contemporary bioethics issues. You are encouraged to contact “The Great Debates” department editor, D. Micah Hester, UAMS/Humanities, 4301 W. Markham St., #646, Little Rock, AR 72205, with any suggestions for debate topics and interlocutors you would like to see published herein.

_Offering a new edition of Dewey’s 1916 collection of essays_ This critical edition of John Dewey’s 1916 collection of writings on logic, _Essays in Experimental Logic—_in which Dewey presents his concept of logic as the theory of inquiry and his unique and innovative development of the relationship of inquiry to experience—is the first scholarly reprint of the work in one volume since 1954. _Essays in Experimental Logic, _edited by D. Micah Hester and Robert B. Talisse, uses the authoritative texts (...) from the _Collected Works of John Dewey, 1882–1953_ and includes as well articles from leading journals representing various contemporary schools of philosophy that criticized Dewey’s experimentalism. Culling materials from six volumes of the chronologically arranged _Collected Works_, this single-volume edition of _Essays_ marks a crucial point in Dewey’s intellectual development: one in which Dewey critically engages idealistic and intuitionist theorists and lays the groundwork for his mature theory of inquiry. The text includes a new introduction by renowned Dewey scholar Tom Burke that places _Essays_ in philosophical and historical context. In addition to the original essays, _Essays in Experimental Logic_ also features five critical essays by Dewey’s contemporaries, including Bertrand Russell, Wendell T. Bush, R. F. Alfred Hoernlé, H. T. Costello, and C. S. Peirce. (shrink)

Several months ago, I was walking down the hallway outside our medical school faculty offices and a colleague stopped me to ask a question. He phrased his query in the context of a case that raised ethical issues for him, and he asked me to respond. I obligingly offered my opinion given the details he presented, ending my comments with the phrase, To this he kindly shot back, To be honest, this question caught me off guard. Though his particular dilemma (...) was relatively well-trod territory for many bioethicists, I had done little research on the issue and could not immediately render a response to his latter query. (shrink)

In this paper I use William James's understanding of significance in life to show that for certain patients euthanasia and assisted suicide can be importantly meaningful acts that family, friends, and health care professionals must acknowledge and even, at times, aid in bringing to fruition. Dying with meaning is transformative. It reshapes the lives of others that are left behind, giving to their lives new groundings by engaging them in the meaning of dying for us. For the patient, dying with (...) meaning takes the seemingly formless void in the abyss of death and gives it a significant purpose in the last stages of life itself; it turns potential nothingness into actual significance. To the extent that we outsiders do not help the dying, we condemn terminally ill patients to a meaningless existence until they die. (shrink)

Since the decade of the 1970s, and particularly since the first successful test-tube baby in 1978, the development and use of assisted reproductive technologies have grown exponentially. Would-be parents—including those in so-called traditional male-female marriages, unmarried adults, postmenopausal women, and same-sex partnerships—who just over 20 years ago had no recourse for their fertility issues can now pursue their desires to have children with at least a partial, if not, total, genetic and/or biological relationship. Ovulation-stimulating medications, artificial insemination using the sperm (...) of a husband or unrelated donor, in vitro fertilization with embryo transfer, intracytoplasmic sperm injection, and gamete and zygote intrafallopian transfers are but a few of a host of treatment options ranging in complexity, invasiveness, and expense. And on the horizon are genetic techniques such as cloning—which was once considered “pure” science fiction but in 1997 became what some call an inevitability, with the development of mammalian cloning in the form of the now-famous Dolly the sheep. (shrink)

In April of 2001 I published a brief commentary in the journal Academic Medicine questioning the current character and functioning of the National Residency Matching Program. The purpose of the article was to stimulate a rethinking of process. At 50 years old, the environment through which the match operates has changed, and as such I thought it time to ask ourselves whether or not the match, its algorithm, and, more important, the values it manifests might well need an overhaul.

While tens of thousands of people across the United States serve on hospital and other healthcare ethics committees , almost no carefully prepared educational material exists for HEC members. Ethics by Committee is a one volume collection of chapters developed exclusively for this educational purpose. Experts in bioethics, clinical consultation, health law, and social psychology from across the country contribute chapters on ethics consultation, education, and policy development.

Hester Goodenough Gelber is Associate Professor of Religious Studies, Stanford University.

INTRODUCTION William Alston opens this dialogue on faith, reason, and skepticism by arguing that if the belief-forming processes of a typical Christian are ...

Although there are many different moral arguments concerning the use of Best Interests in neonatal decision-making, there seems in practice a firm commitment to application of the concept. And yet, there is still little reflection given by practitioners about what employing a Best Interest determination means in infant care. The following lays out a comprehensive taxonomy of interest-sources in order to provide for more robust considerations of what constitutes best interests of/for neonates.

Classroom discussion is frequently proposes as an essential part of democratic citizenship education. Literature, however, pays little attention to what kind of discussion is most effective and how teachers can facilitate a discussion. This study aims to contribute to the development of a framework for analysing the characteristics of classroom discussions and the different roles teachers can adopt in guiding a discussion on controversial issues. In addition, we investigated how the way teachers guide the discussion is related to the structure (...) and content features of the discussion. The framework was used to analyse five classroom discussions in secondary education. Our framework appeared to be useful for revealing differences in the structure and content features of the classroom discussions and in the way teachers guide the discussion. The results also indicated that a high degree of teacher regulation was related to high content quality and more participation from students. A high degree of stu... (shrink)

This paper attempts to defend pragmatic approaches to bioethics against detractors, showing how particular critics have failed or succeeded. The paper divides bioethics from a pragmatic point of view into three groups. The first group is called "bioethical pragmatism" that will be represented by two book-chapters from the anthology, Pragmatic Bioethics . The second group is called "clinical pragmatism" championed by Fins, Baccetta, and Miller. Finally, a third group, which has roots in the legal tradition, has been called "freestanding pragmatism" (...) and is portrayed by Grey, Posner, and Wolf. Each group has been criticized in journal articles, and, in turn, this paper critiques some of the (mis)understandings put forth by Tollefsen, Jansen, and Arras about the capabilities and status of pragmatism in bioethical discussions. Finally, it concludes with cautionary notes about pragmatic bioethics in hopes that pragmatists will learn from their own insights about the human condition and the discipline of bioethics. (shrink)

Die medizinischen Interventionen bei Intersexualität basieren auf den vorherrschenden gesellschaftlichen Geschlechtsnormen, die das intersexuelle Kind als behandlungsbedürftige Abweichung sehen. Aus diesem Blickwinkel wird unter „Heilung“ die erfolgreiche Integration des intersexuellen Individuums in ein eindeutig abgegrenztes Geschlecht verstanden, das durch eine medizinische Behandlung hergestellt wird. Dabei wird einerseits vorausgesetzt, dass unbehandelte intersexuelle Individuen nicht erfolgreich „heilen“ können, und andererseits, dass behandelte Individuen medizinische Interventionen als „Heilungsmaßnahmen“ erleben. Die Exploration der medizinischen Fachliteratur und der Berichte aus erster Hand sowohl von behandelten als (...) auch von unbehandelten Menschen mit Intersexualität lassen diese Vorannahmen fragwürdig erscheinen. In der Literatur wird nämlich belegt, dass als grundlegende Mittel, die tatsächlich bei diesen Menschen zu einer „Heilung“ führen, zentrale Werte wie Selbstakzeptanz der Andersartigkeit, Überwindung der Isolation durch Austausch mit anderen in ähnlichen Situationen und Wahrhaftigkeit von Bedeutung sind. Dies würde bedeuten, dass eine medizinische Intervention zur Überwindung der sozialen Ausgrenzung in Fällen von Intersexualität möglicherweise nicht die effektivste „Heilungsmaßnahme“ ist. Die medizinische Behandlung muss vielmehr darauf ausgerichtet werden, die Reaktion auf Intersexualität zu überwinden, als diesen Zustand selbst als pathologisch anzusehen. (shrink)