Medical Research Council, Capetown, South Africa Nasheen Naidoo Medical Research Council, Capetown, South Africa Shamagonam James Medical Research Council, Durban, South Africa Priscilla Reddy Medical Research Council, Capetown, South Africa * Corresponding author: 306 Arnold House, School of Public Health & Health Sciences, University of Massachusetts, Amherst, MA 01003, USA. Tel.: (413) 545 1005; Email: Buchanan{at}schoolph.umass.edu ' + u + '@' + d + ' '//--> . Abstract The analysis presented here lays out the ethical warrants for requiring community oversight (...) of health research conducted in international settings. It reviews the inadequacies with the current standards of individual informed consent and research ethics committee review, and then, shows how a broader population-based public health perspective raises new demands on justice involving due consideration of the rights, harms and benefits to the community as a whole. As developed here, an ethical standard that requires community oversight of health research is justified on three principled grounds: respect for community autonomy and their right to self-determination; due consideration of the consequences of the research for the community as a whole; and, a more complete understanding of human autonomy. The paper concludes with practical recommendations regarding the composition of Community Advisory Boards to ensure that they have legitimate decision-making authority in diverse socio-cultural contexts. CiteULike Connotea Del.icio.us What's this? (shrink)

Christian Medical College, Vellore, India Jayaprakash Muliyil Christian Medical College, Vellore, India Gagandeep Kang * Christian Medical College, Vellore, India * Corresponding author: Department of Gastrointestinal Sciences, Christian Medical College, Vellore 632 004, Tamil Nadu, India. Tel.: +91 416 228 2052; Fax: +91 416 223 2035; Email: gkang{at}cmcvellore.ac.in ' + u + '@' + d + ' '//--> Abstract Comprehension and recall of informed consent was assessed after the study closure in the parents/guardians of a birth cohort of children participating (...) in an intensive three-year diarrhoeal surveillance. A structured questionnaire was administered by field workers who had not participated in the study's follow-up protocol. Of 368 respondents, 329 (89.4 per cent) stated that the study was adequately explained during enrolment, but only 159 (43.2 per cent) could recall that it was on diarrhoea. Nearly half (45.9 per cent) of the respondents stated that they would not have participated if free medical treatment was not provided, although the free medical clinic was not offered at enrolment. Spousal approval (82.9 per cent) was the most important factor in the decision to participate. In the multivariate analysis, maternal education was associated with increased awareness about the disease under study: mothers without any formal education had the lowest awareness (OR = 3.47, 95 per cent CI = 1.60–7.51). Despite a high compliance with the study protocol, retention of understanding about the research study was low over a long period of time. Although the local government provides free healthcare in the study area, respondents cited free healthcare as an important reason for participation, highlighting the need for true health equity before meaningful informed consent can be obtained. CiteULike Connotea Del.icio.us What's this? (shrink)

Palliation is a relatively new concept that is used in connection with the integral care provided to those who are unable to recover from their illness. The specific meaning of the concept has not been clearly defined. This article explores the possibilities offered by a responsive approach to evaluation that can facilitate a reflexive dialogue on this ambiguous concept. In doing so it draws on a case study of a palliative care project in a Dutch health care authority. The article (...) begins with an overview of the characteristics of a responsive approach to evaluation and addresses interpretative, representational and practical dilemmas. It goes on to present a series of dialogues between health professionals, informal caregivers, patients and evaluators. These dialogues take the form of juxtaposed stories, transcribed conversations and interpretations. Finally, the learning experiences are summarised and the appropriateness of the responsive approach to evaluate palliative care is discussed. (shrink)

Since its origin bioethics has been a specialized, academic discipline, focussing on moral issues, using a vast set of globalized principles and rational techniques to evaluate and guide healthcare practices. With the emergence of a plural society, the loss of faith in experts and authorities and the decline of overarching grand narratives and shared moralities, a new approach to bioethics is needed. This approach implies a shift from an external critique of practices towards embedded ethics and interactive practice improvement, and (...) from a legal defence of rights towards fostering interdependent practices of responsibility. This article describes these transitions within bioethics in relation to the broader societal and cultural dynamics within Western societies, and traces the implications for the methodologies and changing roles of the bioethicist. The bioethicist we foresee is not just a clever expert but also a relationally sensitive person who engages stakeholders in reciprocal dialogues about their practice of responsibility and helps to integrate various sorts of knowledge (embodied, experiential, visual, and cognitive-scientific). In order to illustrate this new approach, we present a case study. It concerns a project focusing on an innovation in elderly care, based on the participation of various stakeholders, especially older people themselves. (shrink)

Michel Foucault's early works criticize the development of modern democratic institutions as creating a surveillance society, which functions to control bodies by making them feel watched and monitored full time. His later works attempt to recover private space by exploring subversive techniques of the body and language. Following Foucault, pragmatists like Richard Shusterman and Richard Rorty have also developed very rich approaches to this project, extending it deeper into the literary and somatic dimensions of self-stylizing. Yet, for a debate centered (...) on the re-creation of the vision of the self, these discussions have yet to fully engage—even while they set the conditions for this engagement with—issues of posthuman technologies, such as AI, robotics, and genetic engineering. These certainly will constitute the primary engine of public institutional surveillance in the years to come. With this surveillance, the two spheres of private self-fashioning and public institutions will continue to evolve in relation to one another. As they do so, democratic society will change considerably. Perhaps Rorty's own normative and linguistic ideal of conversational maintenance may provide something of a democratic limit case on any future posthuman self-fashioning. (shrink)

Basson's commentary on my proposals regarding the structure and function of research in bioethics provides a welcome opportunity for extended comparison of standard approaches with the suggestions made in ‘What Bioethics Should Be.’ I begin by noting a common assumption underlying our respective views. I then address points of fundamental difference, indicating why the experimental method proposed in my original essay presents a potentially more productive strategy for examining moral issues in biomedicine. In the latter respect, I certainly disagree with (...) Basson's contention that "we are unable to test" metaethical hypotheses "against reality" (Basson, p. 185) – a proposition which seems no more defensible than the equally untenable claim that we cannot refine methods of natural science research through examination of their usefulness in advancing our understanding of the correlation of events in nature. CiteULike Connotea Del.icio.us What's this? (shrink)

Shared views regarding the moral respect which is owed to children in family life are used as a guide in determining the moral permissibility of nontherapeutic clinical research procedures involving children. The comparison suggests that it is not appropriate to seek assent from the preadolescent child. The analogy with interventions used in family life is similarly employed to specify the permissible limit of risk to which children may be exposed in nontherapeutic research procedures. The analysis indicates that recent writers misconceive (...) how certain moral principles, such as respect for personal autonomy, require us to act toward children. The results are also used to assess proposed federal regulations on research with children. (shrink)

This paper investigates the way in which the sexuality of women has been posited in relation to rats as experimental subjects, exploring the stakes of a scientific debate that takes the social world of female sexuality as its focus and as a political problem. Studies that purport to understand female sexuality by investigating rat behavior rely on problematic assumptions about sovereign agents motivating sexual behavior. Such studies also aim to do away with so-called deviant sexual behaviors and, as a consequence, (...) gay people. Theories of agential realism and hybridity serve as counterforces to these inherently repressive perspectives by insisting on the multiple determinations of sexuality and subjectivity among women. (shrink)

A cost analysis of the utilization of new expensive vascular grafts is performed, applying the methodology of decision analysis to the theoretical case of a sixty year old male patient undergoing femoropopliteal grafting for limb threatening ischemia. The problem is presented graphically as a decision tree, uncertainties are quantified in terms of probabilities and end outcomes are evaluated in monetary terms. This informations is then utilized to calculate cost values associated with alternative actions.Based on initial cumulative patency figures of the (...) new more expensive grafts and the known performance of the older grafts, the initial high expense for the new grafts is justified economically, if the saphenous vein is not available. This analysis, apart from giving an answer to a specific clinical problem, can be viewed as a general model for cost analysis of surgical procedures. (shrink)

Our beloved genders of the present moment are neither universal nor trans-historical presences in the world. The specific gender order which we employ today is the legacy of a particular cultural and political history, and there is still a great deal at stake in preserving it. As a graduate student I stumbled upon the topic of intersexuality a few years ago and found myself enthralled with its implications. Continuing to present itself inspite of all our scientific knowledge about the supposed (...) immutability of female and male, intersexuality disrupts the gender order. The response to this disruption has been swift and terrible: from the intersexed infants who enter our world everyday are carved (literally and figuratively) supposedly normal boys and girls (mostly girls). The following exposition represents a pre-fieldwork (theoretical) stage in my current research and attempts to demonstrate that medical authorities manage intersex cases as they do in order to stabilize the always precarious institution of heterosexuality. (shrink)

We are more alike than we are different.In male prisons, the agency and antisocial mindset of violent offenders is taken seriously in the pursuit of rehabilitation. Male offenders are expected to own full agency for their cruelty and violence to others, and to explore it in supported rehabilitative group-work programs. Such programs have been shown to be highly effective for some offenders and relate to a process of engaging with a new pro-social identity and taking responsibility for leading a "good (...) life."Such programs hardly exist for violent women. Psychological services in female prisons rarely offer programs on anger management or opportunities to explore the wish to hurt or control; rather, they emphasize .. (shrink)

The liberal approach to ethics quite naturally tends toward the classic individualistic theory of society, to reductionism or psychologism so-called, that is, to a reduction of all social action to individual action.2 For example, liberalism allows one to experiment with new medications on one's own body. By extension, liberalism allows one to experiment, it seems, on another person's body with new medication if one acts as the other person's agent, that is, if one has the other person's proper consent. We (...) all know that new medicines are introduced into the market experimentally; indeed, government agencies, such as food and drug administrations, are supposed to supervise such experimentations and eliminate from the market as quickly as possible new (or old) medications that prove harmful. Hence, the very introduction of a new medicine into the market requires the consent of the public - in the form of proper permits to manufacture and market new (and old) drugs and other medications. (shrink)

This paper argues that the concept of management is critically important for understanding managed care. A proper interpretation of management is needed before a positive account of the ethics of managed care can be constructed. The paper discusses three aspects of management: administrative, clinical, and resource management, and compares the central commitments of traditional medical practice with those of managed care for each of these aspects. In so doing, the distinctive conceptual features of the managed care paradigm are discussed. The (...) paper concludes by arguing that the concept of management implicit in the managed care paradigm affords a basis for building a more adequate ethic of managed care. (shrink)

This paper discusses the importance of Richard M. Zaners work on clinical ethics for answering the question: what kind of doing is ethics consultation? The paper argues first, that four common approaches to clinical ethics – applied ethics, casuistry, principlism, and conflict resolution – cannot adequately address the nature of the activity that makes up clinical ethics; second, that understanding the practical character of clinical ethics is critically important for the field; and third, that the practice of clinical ethics is (...) bound up with the normative commitments of medicine as a therapeutic enterprise. (shrink)

This paper offers an exposition of what the question of method in ethics consultation involves under two conditions: when ethics consultation is regarded as a practice and when the question of method is treated systematically. It discusses the concept of the practice and the importance of rules in constituting the actions, cognition, and perceptions of practitioners. The main body of the paper focuses on three elements of the question of method: canon, discipline, and history, which are treated heuristically to outline (...) what the question of method in ethics consultation fully involves. (shrink)

This paper analyzes one dimension of the frequently alleged contradiction between treating medicine as a business and as a profession, namely the incompatibility between viewing the physician patient relationship in economic and moral terms. The paper explores the utilitarian foundations of economics and the deontological foundations of professional medical ethics as one source for the business/medicine conflict that influences beliefs about the proper understanding of the therapeutic relationship. It, then, focuses on the contrast and distinction between medicine as business and (...) profession by critically analyzing the classic economic view of the moral status of medicine articulated by Kenneth Arrow. The paper concludes with a discussion of some advantages associated with regarding medicine as a business. (shrink)

In this paper I analyze the alleged conflict between economic incentives to efficiently utilize health care resources and the obligation to provide patients with the best possible medical care. My analysis is developed in four stages. First, I discuss briefly the nature of prospective payment systems and economic incentives as well as the issue of professional autonomy. Second, I disscuss the notion of an incentive for action both as an economic incentive and as a concept of moral psychology. Third, I (...) analyze several definitions of the physician's professional obligation and discuss four conditions that morally qualify the obligation. And fourth, I explore why the views of economists and physicians differ so strikingly on the question of economic incentives. In the process of this analysis, I argue that criticisms of prospective payment systems which are premised primarily on the conflict between economic incentives to contain cost and the professional obligation of beneficence are probably as much a matter of rhetoric as serious argumentation. Keywords: autonomy, beneficence, cost containment, economic incentives, moral obligation, prospective payment CiteULike Connotea Del.icio.us What's this? (shrink)

Recent philosophical attention to the language of disease has focused primarily on the question of its value-neutrality or non-neutrality. Proponents of the value-neutrality thesis symbolically combine political and other criticisms of medicine in an attack on what they see as value-infected uses of disease language. The present essay argues against two theses associated with this view: a methodological thesis which tends to divorce the analysis of disease language from the context of the practice of medicine and a substantive thesis which (...) holds that disease language is evaluatively neutral. In particular, the essay critically focuses on the value neutral position adopted by Christopher Boorse, which he terms a functional theory of disease. The argument concerns whether or not one can have value neutral description of disease states or whether disease language essentially involves values. (shrink)

Expectations are growing that literature may contribute to clinical skills. Narrative medicine is a quickly expanding area of research. However, many people remain sceptical to the idea of literature having a capacity to save the life of medicine . It is therefore urgent to scrutinize both the arguments in favour of and those against the potential of literature for increasing medical understanding. This article attempts to do this. It does in fact support the assertion that literature is important, but it (...) stresses precisely its character of potential. There is no simple connection between acquaintance with literary texts and understanding of the different aspects of medical work. Much more need to be known about the conditions which allow the experiences residing in texts to be transformed into lived personal knowledge. (shrink)

Agich has identified `watching' – the formal orinformal observation of the medical setting – as oneof the four main roles of the clinical bioethicist. By an analysis of a case study involving a bioethicsstudent who engaged in watching at an HIV/AIDS clinicas part of his training, I raise questions about theethical justification of watching. I argue that theinvasion of privacy that watching entails makes theactivity unacceptable unless the watcher has receivedprior consent from the patients who are beingobserved. I conclude that, (...) even though it isimportant for bioethics students to understand thecomplexities of actual medical practice, watchingshould play a prominent role in bioethics educationonly if the privacy problems in it can be resolved. (shrink)

In recent years, there has been a growing interest in finding stronger means of securitising identity against the various risks presented by the mobile globalised world. Biometric technology has featured quite prominently on the policy and security agenda of many countries. It is being promoted as the solution du jour for protecting and managing the uniqueness of identity in order to combat identity theft and fraud, crime and terrorism, illegal work and employment, and to efficiently govern various domains and services (...) including asylum, immigration and social welfare. In this paper, I shall interrogate the ways in which biometrics is about the uniqueness of identity and what kind of identity biometrics is concerned with. I argue that in posing such questions at the outset, we can start delimiting the distinctive bioethical stakes of biometrics beyond the all-too-familiar concerns of privacy, data protection and the like. I take cue mostly from Cavarero’s Arendt-inspired distinction between the “what” and the “who” elements of a person, and from Ricoeur’s distinction between the “idem” and “ipse” versions of identity. By engaging with these philosophical distinctions and concepts, and with particular reference to the example of asylum policy, I seek to examine and emphasise an important ethical issue pertaining to the practice of biometric identification. This issue relates mainly to the paradigmatic shift from the biographical story (which for so long has been the means by which an asylum application is assessed) to bio-digital samples (that are now the basis for managing and controlling the identities of asylum applicants). The purging of identity from its narrative dimension lies at the core of biometric technology’s overzealous aspiration to accuracy, precision and objectivity, and raises one of the most pressing bioethical questions vis-à-vis the realm of identification. (shrink)