BackgroundThe potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' on (...) the ground and the challenges of community consultation.MethodsThe findings are based on action research methods, including analysis of community engagement documentation and the observations of the authors closely involved in their development and implementation. Qualitative and quantitative content analysis has been used for documentation of staff meetings and trainings, a meeting with 24 community leaders, and 40 large public and 70 small community group meetings. Meeting minutes from a purposive sample of six community representative groups have been analysed using a thematic framework approach.ResultsField workers described challenges around misunderstandings about research, perceived pressure for recruitment and challenges in explaining the study. During consultation, leaders expressed support for the study and screening for sickle cell disease. In community meetings, there was a common interpretation of research as medical care. Concerns centred on unfamiliar procedures. After explanations of study procedures to leaders and community members, few questions were asked about export of samples or the archiving of samples for future research.ConclusionsCommunity engagement enabled researchers to take account of staff and community opinions and issues during the study and adapt messages and methods to address emerging ethical challenges. Field workers conducting informed consent faced complex issues and their understanding, attitudes and communication skills were key influences on ethical practice. Community consultation was a challenging concept to put into practice, illustrating the complexity of assessing information needs and levels of deliberation that are appropriate to a given study. (shrink)

Background: There is general consensus internationally that unfair distribution of the benefits of research is exploitative and should be avoided or reduced. However, what constitutes fair benefits, and the exact nature of the benefits and their mode of provision can be strongly contested. Empirical studies have the potential to contribute viewpoints and experiences to debates and guidelines, but few have been conducted. We conducted a study to support the development of guidelines on benefits and payments for studies conducted by the (...) KEMRI-Wellcome Trust programme in Kilifi, Kenya. Methods: Following an initial broad based survey of cash, health services and other items being offered during research by all programme studies (n = 38 studies), interviews were held with research managers (n = 9), and with research staff involved in 8 purposively selected case studies (n = 30 interviewees). Interviews explored how these ‘benefits’ were selected and communicated, experiences with their administration, and recommendations for future guidelines. Data fed into a consultative workshop attended by 48 research staff and health managers, which was facilitated by an external ethicist.FindingsThe most commonly provided benefits were medical care (for example free care, and strengthened quality of care), and lunch or snacks. Most cash given to participants was reimbursement of transport costs (for example to meet appointments or facilitate use of services when unexpectedly sick), but these payments were often described by research participants as benefits. Challenges included: tensions within households and communities resulting from lack of clarity and agreement on who is eligible for benefits; suspicion regarding motivation for their provision; and confusion caused by differences between studies in types and levels of benefits. Conclusions: Research staff differed in their views on how benefits should be approached. Echoing elements of international benefit sharing and ancillary care debates, some research staff saw research as based on goodwill and partnership, and aimed to avoid costs to participants and a commercial relationship; while others sought to maximise participant benefits given the relative wealth of the institution and the multiple community needs. An emerging middle position was to strengthen collateral or indirect medical benefits to communities through collaborations with the Ministry of Health to support sustainability. (shrink)

Background: The magnitude of bullying and harassment among psychiatrists is reportedly high, yet no peer-review published studies addressing this issue could be found. Therefore, it was decided to conduct a pilot study to assess the degree of the problem, the types of bullying/harassment and to provide some insights into the situation.Methods and Principal Findings: Following multiple focus group meetings, a yes/no response type questionnaire was developed to assess the degree and type of bullying and harassment experienced by psychiatrists. Over a (...) 3-month period the questionnaire was administered to a random sample of 60 psychiatrists. 57 out of the 60 psychiatrists reported harassment and bullying. Frequencies of the following response variables are presented in descending order: rumours 40% ; defamation 20% ; passing remarks 20% ; false accusations 15% ; threats 13.3% ; verbal abuse 13.3% ; unjustified complaints 13.3% ; promotion blocked 13.3% ; humiliation 13% ; bad reference given 10% ; credentials questioned 8.3% ; physical attacks 5% ; termination 5% ; derogatory remarks 1.7% and 1.7% were subjected to personal work. As a result of being subjected to harassment, 66.7% of the psychiatrists did not take any action, whereas 33.3% confronted the person they believed responsible. Asked whether the bullying and harassment caused distress, 18.3% of the psychiatrists did not report any effect, 30% reported mild distress, 40% moderate distress and severe distress was reported by 11.7%.Conclusions: It was concluded that the magnitude of bullying and harassment among psychiatrists may be quite high, as evidenced by this pilot study. There is a need for extensive systematic studies on this subject and to establish strategies to prevent and address this issue at a national and regulatory level. (shrink)

The nature of quantum computation is discussed. It is argued that, in terms of the amount of information manipulated in a given time, quantum and classical computation are equally efficient. Quantum superposition does not permit quantum computers to ''perform many computations simultaneously'' except in a highly qualified and to some extent misleading sense. Quantum computation is therefore not well described by interpretations of quantum mechanics which invoke the concept of vast numbers of parallel universes. Rather, entanglement makes available types of (...) computation processes which, while not exponentially larger than classical ones, are unavailable to classical systems. The essence of quantum computation is that it uses entanglement to generate and manipulate a physical representation of the correlations between logical entities, without the need to completely represent the logical entities themselves. (shrink)

Objectives: Evidence based patient choice seems based on a strong liberal individualist interpretation of patient autonomy; however, not all patients are in favour of such an interpretation. The authors wished to assess whether ideals of autonomy in clinical practice are more in accordance with alternative concepts of autonomy from the ethics literature. This paper describes the development of a questionnaire to assess such concepts of autonomy.Methods: A questionnaire, based on six moral concepts from the ethics literature, was sent to aneurysm (...) patients and their surgeons. The structure of the questionnaire was assessed by factor analysis, and item reduction was based on reliability.Results: Ninety six patients and 58 surgeons participated. The questionnaire consisted of four scales. Two of the scales reflected the paternalistic and consumerist poles of the liberal individualist model, one scale reflected concepts of Socratic autonomy and of procedural independence, and the fourth scale reflected ideals of risk disclosure.Discussion: The Ideal Patient Autonomy Scale is a 14 item normative instrument. It is clearly distinct from the generally used psychological preference questionnaires that assess preferences for physician-patient roles. (shrink)

Adrian Viens, Guest Editor of this Olivieri symposium, and Julian Savulescu, the Editor of JME, set the scene for the symposium."In failing...[her] when she needed them most, it is now clear that some members of the University’s Faculty of Medicine heard her muffled cries of academic freedom from the back room, yet their response was to serve another round of drinks and turn the music up louder. With the bombshell revelations in the...affair, the plug may have been pulled on this (...) business sponsored party, and hopefully a sober re-examination of the university’s neglected role and responsibility toward independent inquiry and academic freedom can begin.1" "These guys don’t get one thing—we’re not going away. This isn’t a personal vendetta. This is something I want patients to be protected from when I’m dead, fifty years from now.2" "[The Olivieri affair is] not a mystery novel, but instead the latest skulduggery at Toronto’s Hospital for Sick Children.1" "The legal assaults which you have endured in your battle against the drug company, and in your battle against the medical establishment appear to have been fought with the type of uncommon bravery that is rarely seen. It is for this reason that our trustees have unanimously chosen to recognise you for this most prestigious award.3" "[The Olivieri affair resulted from] a fundamental misreading of the issue as a mere contractual and scientific dispute...[it is] Canada’s worst academic and research scandal in decades...[Since 1998, Olivieri has been] demoted, then restored, then harassed. She has been smeared with allegations attacking her competence, integrity, sanity and personality....4"The Olivieri affair is one of the most important events to occur in research ethics. From its dominance in the Canadian and international news media, to changes in the governance of public health, academic medicine, …. (shrink)

This paper examines the use of case studies in ethics education. While not dismissing their value for specific purposes, the paper shows the limits of their use. While agreeing that case studies are narratives, although rather thin stories, the paper argues that the claim that case studies could represent reality is difficult to sustain. Instead, the paper suggests a way of using stories in ethics teaching that could be more real for students, while also giving them a way of thinking (...) about their own professional practices. The paper shows how the method can be used to develop a more critical and reflective practice for students in the health care professions. Some immediate problems with the method are discussed. (shrink)

Informed consent enjoys an unassailable position in both clinical and research situations as a safeguard of patients’ rights. Keeping the patient involved in the decision making process is easier when there is direct communication with the individual. The Pakistani milieu offers challenges to this process because crucial decision making is often done by family members or is left entirely up to the attending physician. There seems to be a general acceptance of this shifting of focus from the individual to other (...) players. This also raises certain ethical dilemmas for physicians who may feel uncomfortable with communication which excludes the patient or in accepting a paternalistic primary decision making role. The objective of this informal qualitative study was to ascertain physicians’ perceptions regarding the process of information delivery to the patient in the Pakistani context and the various influences acting upon it. (shrink)

Parents’ freedom to choose infant male circumcision is the correct policyIndividuals and groups lobbying to have infant male circumcision prohibited or restricted often argue that the practice of routinely circumcising infants is unjustified. For instance, in this issue of the journal, John Hutson argues that it is virtually impossible to justify a policy in which the medical establishment should be able to embark on a “mass circumcision” campaign of 100% of the infant male population [see page 238].1Indeed, I would be (...) hard pressed to find anyone who could rationally disagree with this contention. However, this is because no one is currently arguing for the enactment of a policy that stipulates that all healthy male infants should be routinely circumcised . Arguments seeking to support a prohibition of “routine infant circumcision”, such as the one by Hutson, are arguing against a straw man—and a pitiful one at that.2 Such arguments only serve to misconstrue the debate and avoid engaging in the real and pressing issues concerning the legitimacy of the provision of this procedure.The questions that should be considered, and the ones which I shall be interested in discussing here, are what reasons are justifiable for allowing parents to choose to have their son circumcised? After well informed and careful deliberation should parents have the freedom to choose to have their son circumcised? These are the most relevant questions to be considered because there is a growing collection of citizens, medical practitioners, and lawyers who are currently lobbying for the practice of infant male circumcision to be outlawed—for example, there is a bioethicist who argues that the criminal law should be used …. (shrink)

In the light of the remarkable changes of political colour which Aeschylus has undergone in the hands of scholars, there is a certain amusing irony about the fact that the satyr-play which followed the Oresteia was the Proteus. Sadly, we know too little of the Proteus to say whether it would have resolved this debate about the Oresteid's political stance, though one may have one's doubts.

Good medical practice requires evidence of effectiveness to address deficits in care, strive for further improvements, and justly apportion finite resources. Nevertheless, the potential of palliative care is still held back by a paucity of good evidence. These circumstances are largely attributable to perceived ethical challenges that allegedly distinguish dying patients as a special client class. In addition, practical limitations compromise the quality of evidence that can be obtained from empirical research on terminally ill subjects.This critique aims to appraise the (...) need for focused research, in order to develop clinical and policy decisions that will guide health care professionals in their care of dying patients. Weighted against this need are tenets that value the practical and ethical challenges of palliative care research as unique and insurmountable. The review concludes that, provided investigators compassionately apply ethical principles to their work, there is no justification for not endeavouring to improve the quality of palliative care through research. (shrink)

Whether it is fair to use personal responsibility of patients for their own health as a rationing criterion in healthcare is a controversial matter. A host of difficulties are associated with the concept of personal responsibility in the field of medicine. These include, in particular, theoretical considerations of justice and such practical issues as multiple causal factors in medicine and freedom of health behaviour. In the article, personal responsibility is evaluated from the perspective of several theories of justice. It is (...) argued that in a healthcare system based on both equality of opportunity and solidarity, responsible health behaviour can—in principle—be justifiably expected. While the practical problems associated with personal responsibility are important, they do not warrant the common knee-jerk refusal to think more deeply about responsibility for health as a means of allocating healthcare resources. In conclusion, the possibility of introducing personal responsibility as a fair rationing criterion is briefly sketched. (shrink)

he true relation between these scenes and historic fact is more mysterious and less simple. The metamorphosis takes place on a higher plane. Historic events and the poet's inner experience are stripped of everything accidental and actual. They are removed from time and transported into the large and distant land of Myth. There, on a higher plane of life, they are developed in symbolic and poetic shapes having a right to an existence of their own. The fact, therefore, that the (...) subjection of the storm is described in a simile for a moment highlighting a very important sphere of the poem is more decisive than a possible allusion to the younger Cato. (shrink)

In this article, an introduction to a proposed more comprehensive treatment of the subject, I wish to discuss the contribution that the parabasis makes to the understanding and interpretation of Aristophanes’ comedies. The study of this part of the plays has in the past concentrated upon two main areas: firstly, its role in the development of comedy, including questions about its original position in the dramatic structure and its relationship to other elements such as the parodos and agon; and secondly, (...) its role as the repository of Aristophanes’ personal views.1I shall touch but incidentally on the first of these, though my argument will have some bearing on it; to the second I shall return at the end. My aim is to consider an aspect of the parabasis that has not so much been neglected as dismissed as non-existent: the relation between the contents of the parabasis and those of the rest of the play. It is generally agreed that the parabasis deals with matters that are irrelevant to the dramatic action, but I wish to argue that it has a significant role as the focus of the most important themes in the play: far from breaking up the unity of the play, the parabasis provides indications as to where that unity is to be found, besides giving hints about the meaning of the play and the nature of Aristophanic comedy generally.2. (shrink)

Packing optimization problems have a wide spectrum of real-word applications. One of the applications of the problems is problem of placement of containers with spent nuclear fuel on the storage platform. The solution of the problem can be reduced to the solution of the problem of finding the optimal placement of a given set of congruent circles into a multiconnected domain taking into account technological restrictions. A mathematical model of the prob-lem is constructed and its peculiarities are considered. Our approach (...) is based on the mathematical modelling of rela-tions between geometric objects by means of phi-function technique. That allowed us to reduce the problem solving to nonlinear programming. Today, an important scientific problem is the problem of creating conditions for safe storage of spent nuclear fuel. In the process of creating any dry spent nuclear fuel storage, the following main stages can be identified: site selection, storage design, construction, operation and decommissioning. A full check for compliance of the repository and its elements with these standards usually begins at the design stage. At the stage of site selection, the inspection for compliance with safety standards is carried out only in terms of the impact of the repository as a whole on the environment. This approach cannot be considered fully appropriate, because, taking into account, for example, all the climatic features of the future storage site, it is possible to adjust the thermal storage regimes of spent nuclear fuel. Similarly, it can be considered necessary to analyze and select the shape of the storage site in order to accommo-date the maximum possible number of spent fuel containers. Such a choice, obviously, should be made taking into ac-count the norms of nuclear, radiation and thermal safety, as well as in compliance with technological limitations. The problem of finding the optimal placement of containers taking into account the given technological limitations can be formulated in the form of the problem of optimization of geometric design. Therefore, the purpose of the study is to build a mathematical model of the problem and study its characteristics to develop effective methods of solution. The proposed approach is based on mathematical modeling of relations between geometric objects using the method of phi-functions. This allowed to reduce the solution of the problem to the problem of nonlinear programming. (shrink)

This article sets out the key findings from the seminar series ‘Transplantation and organ deficit in the UK: Pragmatic solutions to ethical controversy’ which ran from November 2006 to March 2008, and was sponsored by the Economic and Social Research Council. A broad range of issues were examined in the seminars, including religious and cultural attitudes affecting organ donation, the role of health-care professionals and what could be learned from the experiences of other countries, particularly in the European context. Core (...) participants in the series came from a range of academic and practitioner backgrounds and had different ethical perspectives on issues affecting organ donation and transplantation. Notwithstanding such diversity, the findings set out in the article reflect the fact that core participants were focused on developing a principled, yet pragmatic approach to dealing with the urgent problem of organ shortage in the UK. (shrink)

Can we refer to objects which do not exist? Searle says that we cannot. He postulates an ‘axiom of existence’ such that, if an object does not exist, we cannot refer to it. This ‘axiom of existence’ could be taken simply as a way of defining the notion of ‘reference’; we would not count a reference to a non-existent object as a ‘reference’ in the philosophical sense; or perhaps it might count as a reference but not as a ‘successful’ or (...) ‘consummated’ reference, to use the terminology which Searle sometimes adopts. Whichever way we take Searle's doctrine I wish to argue that it is objectionable. The conceptual scheme he advocates obscures the truth. But I do not deny that there is a temptation to resort to it, and I hope to show that, where lawyers have yielded to the temptation, pernicious doctrines have resulted. (shrink)

Objective: To survey members of the American Society for Bioethics and Humanities and of the Society for Medical Decision Making to elicit the similarities and differences in their reasoning about two clinical cases that involved ethical dilemmas.Cases: Case 1 was that of a patient refusing treatment that a surgeon thought would be beneficial. Case 2 dealt with end-of-life care. The argument was whether intensive treatment should be continued of an unconscious patient with multiorgan failure.Method: Four questions, with structured multiple alternatives, (...) were asked about each case: identified core problems, needed additional information, appropriate next steps and who the decision maker should be.Observations and results: Substantial similarities were noticed between the two groups in identifying the core problems, the information needed and the appropriate next steps. SMDM members gave more weight to outcomes and trade-offs and ASBH members had patient autonomy trump other considerations more strongly. In case 1, more than 60% of ASBH respondents identified the patient alone as the decision maker, whereas members of SMDM were almost evenly divided between having the patient as the solo decision maker or preferring a group of some sort as the decision maker, a significant difference . In case 2, both groups agreed that the question of discontinuing treatment should be discussed with the family and that the family alone should not be the decision maker.Conclusion: Despite distinctively different methods of case analysis and little communication between the two professional communities, many similarities were observed in the actual decisions they reached on the two clinical dilemmas. (shrink)

This book distinguishes itself in its integrated approach towards scientific research, and studies the basics of the methodology of scientific research and the organization of scientific activity from the viewpoint of systems science and system analysis. The book discusses the basics of the methodology including philosophical, psychological, epistemological and ethical/aesthetical foundations, the characteristics of scientific activity, including principles of scientific cognition, the means and methods of scientific research, the organization of a research implementation process and its chronological structure and finally, (...) the organization of a collective scientific research design. (shrink)