Hospices consider themselves places that practise a holistic form of terminal care, encompassing physical and psychological symptoms, and also the social and spiritual support for a dying patient. So far, the underlying ethical principles have been treated predominantly in terms of a normative theoretical discussion. The interview study discussed in this paper is a qualitative investigation into general and hospice-related conceptions of morality among full-time and voluntary workers in German inpatient hospices. It examines moral conflicts and efforts leading to their (...) solution. The main ideas identified include moral neutrality towards the patients and their requests, the capability of acceptance, the idea of self-restraint with respect to the dying patient and the principle of respect for the natural course of dying. Essential triggers for moral conflicts were the inadequate education of patients, problems of acceptance in view of incurable disease, and disagreements between members of patients' families. The interviewees expressed their scepticism towards formal institutions of ethical counselling. The study has shown a type of virtue ethics that forms an integral part of the overall concept of hospice care, which cannot be treated separately from a holistic idea of care at the end of life. (shrink)

Informed consent to breaking (or waiving) bad news is an important yet neglected topic. It is distinct from informed consent to diagnosis and to treatment, and may be logically and ethically sound, provided patients are competent and that no considerable harm may be caused to others by breaking or waiving bad news to patients. This requires a differential assessment procedure in order to balance patient autonomy, benefit and justice towards others, preferably exploring patients’ values, expectations and needs with them, so (...) that an acceptable decision can be made on whether to act on their consent to breaking or waiving bad news, or to ignore it and act on informed consent by proxy. Future study should attempt to provide a detailed characterization of procedures for attaining informed consent to breaking or waiving bad news, and to test their success in establishing ethically sound health care. (shrink)

The purpose of this paper is to provide a simple yet comprehensive organizing scheme for the responsible conduct of research (RCR). The heuristic offered here should prove helpful in research ethics education, where the many and heterogeneous elements of RCR can be bewildering, as well as research into research integrity and efforts to form RCR policy and regulations. The six domains are scientific integrity, collegiality, protection of human subjects, animal welfare, institutional integrity, and social responsibility.

Research involving minors has been the subject of much ethical debate. The growing number of longitudinal, pediatric studies that involve genetic research present even more complex challenges to ensure appropriate protection of children and families as research participants. Long-term studies with a genetic component involve collection, retention and use of biological samples and personal information over many years. Cohort studies may be established to study specific conditions (e.g. autism, asthma) or may have a broad aim to research a range of (...) factors that influence the health and development of children. Studies are increasingly intended to serve as research platforms by providing access to data and biological samples to researchers over many years. (shrink)

‘Scientific dishonesty’ implies the fabrication, falsification or plagiarism in proposing, performing or reviewing research or in reporting research results. A questionnaire was given to postgraduate students at the medical faculties in Sweden who attended a course in research ethics during the academic year 2008/2009 and 58% answered (range 29%–100%). Less than one-third of the respondents wrote that they had heard about scientific dishonesty in the previous 12 months. Pressure, concerning in what order the author should be mentioned, was reported by (...) about 1 in 10 students. We suggest that all departments conducting research should have a written policy about acceptable research behaviour and that all doctoral students should be informed of the content of this policy. Participants in the research groups concerned should also be required to analyse published articles about scientific dishonesty and critically discuss what could be done about unethical conduct. (shrink)

The use of brain imaging technology as a common tool of research has spawned concern and debate over how investigators should respond to incidental fndings discovered in the course of research. In this article, we argue that investigators have an obligation to respond to incidental fndings in view of their entering into a professional relationship with research participants in which they are granted privileged access to private information with potential relevance to participants' health. We discuss the scope and limits of (...) this professional obligation to respond to incidental fndings, bearing in mind that the relationship between investigators and research participants differs fundamentally from the doctor-patient relationship. (shrink)

This article discusses the relation between empirical and normative approaches in bioethics. The issue of dwarf tossing, while admittedly unusual, is chosen as a point of departure because it challenges the reader to look with fresh eyes upon several central bioethical themes, including human dignity, autonomy, and the protection of vulnerable people. After an overview of current approaches to the integration of empirical and normative ethics, we consider five ways that the empirical and normative can be brought together to speak (...) to the problem of dwarf tossing: prescriptive applied ethics, theoretical ethics, critical applied ethics, particularist ethics and integrated empirical ethics. We defend a position of critical applied ethics that allows for a two-way relation between empirical and normative theories. Against efforts fully to integrate the normative and the empirical into one synthesis, we propose that the two should stand in tension and relation to one another. The approach we endorse acknowledges that a social practice can and should be judged both by the gathering of empirical data and by normative ethics. Critical applied ethics uses a five stage process that includes: (a) determination of the problem, (b) description of the problem, (c) empirical study of effects and alternatives, (d) normative weighing and (e) evaluation of the effects of a decision. In each stage, we explore the perspective from both the empirical (sociological) and the normative ethical point of view. We conclude by applying our five-stage critical applied ethics to the example of dwarf tossing. (shrink)

Objectives To investigate high school cheating experiences and attitudes towards academic misconduct of freshmen at all four medical schools in Croatia, as a post-communist country in transition, with intention of raising awareness of academic (dis)honesty. Design and method Students were given an anonymous questionnaire containing 22 questions on the atmosphere of integrity at their high school, self-reported educational dishonesty, their evaluation of cheating behaviour, and on their expectations about the atmosphere of integrity at their university. Setting All schools of medicine (...) of Croatian universities (Zagreb, Rijeka, Split and Osijek). Main measures Descriptive statistics and differences in students' self-reported educational dishonesty, perception of cheating behaviour, and perception of the high school integrity atmosphere. Results Of the 761 freshmen attending the four medical schools, 508 (67%) completed the questionnaire: 481 Croatian and 27 international students. Of the Croatian respondents, almost all (>99%) self-reported engaging in at least one behaviour of educational dishonesty, and 78% of respondents admitted to having frequently cheated in at least one form of assessed academic misconduct. Only three students admitted to having reported another student for cheating. For most of the questions, there was no significant difference in the responses among Croatian students. However, significant differences were found in most responses between Croatian students and their international counterparts, who were significantly less likely to engage in dishonest behaviours. No individual factor was found to correlate with the incidence of self-admitted dishonest behaviour. Frequent cheaters evaluated academic dishonesty significantly more leniently than those who did not cheat. Conclusion Academic dishonesty of university students does not begin in higher education; students come to medical schools ready to cheat. (shrink)

ABSTRACT Uncertainty as to how we should articulate empirical data and normative reasoning seems to underlie most difficulties regarding the ‘empirical turn’ in bioethics. This article examines three different ways in which we could understand ‘empirical turn’. Using real facts in normative reasoning is trivial and would not represent a ‘turn’. Becoming an empirical discipline through a shift to the social and neurosciences would be a turn away from normative thinking, which we should not take. Conducting empirical research to inform (...) normative reasoning is the usual meaning given to the term ‘empirical turn’. In this sense, however, the turn is incomplete. Bioethics has imported methodological tools from empirical disciplines, but too often it has not imported the standards to which researchers in these disciplines are held. Integrating empirical and normative approaches also represents true added difficulties. Addressing these issues from the standpoint of debates on the fact‐value distinction can cloud very real methodological concerns by displacing the debate to a level of abstraction where they need not be apparent. Ideally, empirical research in bioethics should meet standards for empirical and normative validity similar to those used in the source disciplines for these methods, and articulate these aspects clearly and appropriately. More modestly, criteria to ensure that none of these standards are completely left aside would improve the quality of empirical bioethics research and partly clear the air of critiques addressing its theoretical justification, when its rigour in the particularly difficult context of interdisciplinarity is what should be at stake. (shrink)

Objective: To report results from a national survey of coordinators and managers of clinical research studies in the US on their perceptions of and experiences with scientific misconduct.Methods: Data were collected using the Scientific Misconduct Questionnaire-Revised. Eligible responses were received from 1645 of 5302 surveys sent to members of the Association of Clinical Research Professionals and to subscribers of Research Practitioner, published by the Center for Clinical Research Practice, between February 2004 and January 2005.Findings: Overall, the perceived frequency of misconduct (...) was low. Differences were noted between workplaces with regard to perceived pressures on investigators and research coordinators, and on the effectiveness of the regulatory environment in reducing misconduct. First-hand experience with an incident of misconduct was reported by 18% of respondents. Those with first-hand knowledge of misconduct were more likely to report working in an academic medical setting, and to report that a typical research coordinator would probably do nothing if aware that a principal investigator or research staff member was involved in an incident of misconduct.Conclusion: These findings expand the knowledge on scientific misconduct by adding new information from the perspective of research coordinators. The findings provide some data supporting the influence of workplace climate on misconduct and also on the perceived effectiveness of institutional policies to reduce scientific misconduct. (shrink)

Bioethical research has tended to focus on theoretical discussion of the principles on which the analysis of ethical issues in biomedicine should be based. But this discussion often seems remote from biomedical practice where researchers and physicians confront ethical problems. On the other hand, published empirical research on the ethical reasoning of health care professionals offer only descriptions of how physicians and nurses actually reason ethically. The question remains whether these descriptions have any normative implications for nurses and physicians? In (...) this article, we illustrate an approach that integrates empirical research into the formulation of normative ethical principles using the moral-philosophical method of Wide Reflective Equilibrium (WRE). The research method discussed in this article was developed in connection with the project ‘Bioethics in Theory and Practice’. The purpose of this project is to investigate ethical reasoning in biomedical practice in Denmark empirically. In this article, we take the research method as our point of departure, but we exclusively discuss the theoretical framework of the method, not its empirical results. We argue that the descriptive phenomenological hermeneutical method developed by Lindseth and Norberg (2004) and Pedersen (1999) can be combined with the theory of WRE to arrive at a decision procedure and thus a foundation for the formulation of normative ethical principles. This could provide health care professionals and biomedical researchers with normative principles about how to analyse, reason and act in ethically difficult situations in their practice. We also show how to use existing bioethical principles as inspiration for interpreting the empirical findings of qualitative studies. This may help researchers design their own empirical studies in the field of ethics. (shrink)

Der Einsatz empirischer Forschungsmethoden in der Medizinethik hat zu Forderungen nach einem gewandelten Selbstverständnis der Medizinethik geführt, die sich mehr als eine integrierte Disziplin aus Sozialwissenschaften und Ethik verstehen solle. Dagegen wird hier die These vertreten, dass über Sinn und Unsinn des Einsatzes empirischer Methoden zunächst eine moralphilosophische Diskussion erforderlich ist. Medizinethiker müssen ausweisen können, welche empirischen Forschungsresultate zur Beantwortung normativer Fragen erforderlich sind. Ein solcher Ausweis beruht seinerseits jedoch auf normativen Annahmen, die ihrerseits moralphilosophischer Legitimation bedürfen. Der Beitrag untersucht (...) daher den Einsatz empirischer Methoden in der Medizinethik im Hinblick auf Verhältnis von ethischem Grundlagendiskurs und Methodologie der angewandten Ethik. Abschließend wird gefragt, ob nicht ein Großteil von empirischen Studien in der Medizinethik aus forschungsethischen Gründen problematisch ist. (shrink)

This paper analyses the concept of empirical ethics as well as three meta-ethical fallacies that empirical ethics is said to face: the is-ought problem, the naturalistic fallacy and violation of the fact-value distinction. Moreover, it answers the question of whether empirical ethics (necessarily) commits these three basic meta-ethical fallacies.

BackgroundThe concept of evidence-based medicine has strongly influenced the appraisal and application of empirical information in health care decision-making. One principal characteristic of this concept is the distinction between "evidence" in the sense of high-quality empirical information on the one hand and rather low-quality empirical information on the other hand. In the last 5 to 10 years an increasing number of articles published in international journals have made use of the term "evidence-based ethics", making a systematic analysis and explication of (...) the term and its applicability in ethics important.DiscussionIn this article four descriptive and two normative characteristics of the general concept "evidence-based" are presented and explained systematically. These characteristics are to then serve as a framework for assessing the methodological and practical challenges of evidence-based ethics as a developing methodology. The superiority of evidence in contrast to other empirical information has several normative implications such as the legitimization of decisions in medicine and ethics. This implicit normativity poses ethical concerns if there is no formal consent on which sort of empirical information deserves the label "evidence" and which does not. In empirical ethics, which relies primarily on interview research and other methods from the social sciences, we still lack gold standards for assessing the quality of study designs and appraising their findings.ConclusionThe use of the term "evidence-based ethics" should be discouraged, unless there is enough consensus on how to differentiate between high- and low-quality information produced by empirical ethics. In the meantime, whenever empirical information plays a role, the process of ethical decision-making should make use of systematic reviews of empirical studies that involve a critical appraisal and comparative discussion of data. (shrink)

Objectives: To investigate why physicians label end-of-life acts as either ‘euthanasia/ending of life’ or ‘alleviation of symptoms/palliative or terminal sedation’, and to study the association of such labelling with intended reporting of these acts. Methods: Questionnaires were sent to a random, stratified sample of 2100 Dutch physicians. They were asked to label six hypothetical end-of-life cases: three ‘standard’ cases and three cases randomly selected, that varied according to type of medication, physician’s intention, type of patient request, patient’s life expectancy and (...) time until death. We identified the extent to which characteristics of cases are associated with physician’s labelling, with multilevel multivariable logistic regression. Results: The characteristics that contributed most to labelling cases as ‘euthanasia/ending of life’ were the administration of muscle relaxants or disproportional morphine. Other important factors were an intention to hasten death and a life expectancy of several months. Physicians were much more willing to report cases labelled as ‘euthanasia’ or ‘ending of life’ than other cases. Conclusions: Similar cases are not uniformly labelled. However, a physicians’ label is strongly associated with their willingness to report their acts. Differences in how physicians label similar acts impede complete societal control. Further education and debate could enhance the level of agreement about what is physician-assisted dying, and thus should be reported, and what not. (shrink)

Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence into bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of (...) bioethics. Thirdly, the meta‐ethical distinction between ‘is’ and ‘ought’ created a ‘natural’ border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence‐based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared. (shrink)

The relation between ethics and social science is often conceived as complementary, both disciplines cooperating in the solution of concrete moral problems. Against this, the paper argues that not only applied ethics but even certain parts of general ethics have to incorporate sociological and psychological data and theories from the start. Applied ethics depends on social science in order to asses the impact of its own principles on the concrete realities which these principles are to regulate as well as in (...) order to propose practice rules suited to adapt these principles to their respective contexts of application. Examples from medical ethics (embryo research) and ecological ethics (Leopold's land ethic) illustrate both the contingence of practice rules in relation to their underlying basic principles and the corresponding need for a co-operation between philosophy and empirical disciplines in judging their functional merits and demerits. In conclusion, the relevance of empirical hypotheses even for some of the perennial problems of ethics is shown by clarifying the role played by empirical theories in the controversies about the ethical differentiation between positive and negative responsibility and the relation between utility maximisation and (seemingly) independent criteria of distributive justice in the context of social distributions. (shrink)

Background: Hospital nurses are frequently the first care givers to receive a patient’s request for euthanasia or physician-assisted suicide (PAS). In France, there is no consensus over which medical practices should be considered euthanasia, and this lack of consensus blurred the debate about euthanasia and PAS legalisation. This study aimed to investigate French hospital nurses’ opinions towards both legalisations, including personal conceptions of euthanasia and working conditions and organisation. Methods: A phone survey conducted among a random national sample of 1502 (...) French hospital nurses. We studied factors associated with opinions towards euthanasia and PAS, including contextual factors related to hospital units with random-effects logistic models. Results: Overall, 48% of nurses supported legalisation of euthanasia and 29%, of PAS. Religiosity, training in pallative care/pain management and feeling competent in end-of-life care were negatively correlated with support for legalisation of both euthanasia and PAS, while nurses working at night were more prone to support legalisation of both. The support for legalisation of euthanasia and PAS was also weaker in pain treatment/palliative care and intensive care units, and it was stronger in units not benefiting from interventions of charity/religious workers and in units with more nurses. Conclusions: Many French hospital nurses uphold the legalisation of euthanasia and PAS, but these nurses may be the least likely to perform what proponents of legalisation call “good” euthanasia. Improving professional knowledge of palliative care could improve the management of end-of-life situations and help to clarify the debate over euthanasia. (shrink)

Research misconduct has been thoroughly discussed in the literature, but mainly in terms of definitions and prescriptions for proper conduct. Even when case studies are cited, they are generally used as a repository of “lessons learned.” What has been lacking from this conversation is how the lessons of responsible conduct of research are imparted in the first place to graduate students, especially those in technical fields such as engineering. Nor has there been much conversation about who is responsible for what (...) in training students in Responsible Conduct of Research or in allocating blame in cases of misconduct. This paper explores three seemingly disparate cases of misconduct—the 2004 plagiarism scandal at Ohio University; the famous Robert Millikan article of 1913, in which his reported data selection did not match his notebooks; and the 1990 fabrication scandal in Dr. Leroy Hood’s research lab. Comparing these cases provides a way to look at the relationship between the graduate student (or trainee) and his/her advisor (a relationship that has been shown to be the most influential one for the student) as well as at possibly differential treatment for established researchers and researchers-in-training, in cases of misconduct. This paper reflects on the rights and responsibilities of research advisers and their students and offers suggestions for clarifying both those responsibilities and the particularly murky areas of research-conduct guidelines. (shrink)

Background: Legislation on physician-assisted suicide is being considered in a number of states since the passage of the Oregon Death With Dignity Act in 1994. Opinion assessment surveys have historically assessed particular subsets of physicians.Objective: To determine variables predictive of physicians’ opinions on PAS in a rural state, Vermont, USA.Design: Cross-sectional mailing survey.Participants: 1052 physicians licensed by the state of Vermont.Results: Of the respondents, 38.2% believed PAS should be legalised, 16.0% believed it should be prohibited and 26.0% believed it should (...) not be legislated. 15.7% were undecided. Males were more likely than females to favour legalisation . Physicians who did not care for patients through the end of life were significantly more likely to favour legalisation of PAS than physicians who do care for patients with terminal illness . 30% of the respondents had experienced a request for assistance with suicide.Conclusions: Vermont physicians’ opinions on the legalisation of PAS is sharply polarised. Patient autonomy was a factor strongly associated with opinions in favour of legalisation, whereas the sanctity of the doctor–patient relationship was strongly associated with opinions in favour of not legislating PAS. Those in favour of making PAS illegal overwhelmingly cited moral and ethical beliefs as factors in their opinion. Although opinions on legalisation appear to be based on firmly held beliefs, approximately half of Vermont physicians who responded to the survey agree that there is a need for more education in palliative care and pain management. (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)

This article presents the attitudes of nurses towards three issues concerning their role in euthanasia and physician-assisted suicide. A questionnaire survey was conducted with 1509 nurses who were employed in hospitals, home care organizations and nursing homes. The study was conducted in the Netherlands between January 2001 and August 2004. The results show that less than half (45%) of nurses would be willing to serve on committees reviewing cases of euthanasia and physician-assisted suicide. More than half of the nurses (58.2%) (...) found it too far-reaching to oblige physicians to consult a nurse in the decision-making process. The majority of the nurses stated that preparing euthanatics (62.9%) and inserting an infusion needle to administer the euthanatics (54.1%) should not be accepted as nursing tasks. The findings are discussed in the context of common practices and policies in the Netherlands, and a recommendation is made not to include these three issues in new regulations on the role of nurses in euthanasia and physician-assisted suicide. (shrink)

Objectives To investigate high school cheating experiences and attitudes towards academic misconduct of freshmen at all four medical schools in Croatia, as a post-communist country in transition, with intention of raising awareness of academic honesty. Design and method Students were given an anonymous questionnaire containing 22 questions on the atmosphere of integrity at their high school, self-reported educational dishonesty, their evaluation of cheating behaviour, and on their expectations about the atmosphere of integrity at their university. Setting All schools of medicine (...) of Croatian universities . Main measures Descriptive statistics and differences in students' self-reported educational dishonesty, perception of cheating behaviour, and perception of the high school integrity atmosphere. Results Of the 761 freshmen attending the four medical schools, 508 completed the questionnaire: 481 Croatian and 27 international students. Of the Croatian respondents, almost all self-reported engaging in at least one behaviour of educational dishonesty, and 78% of respondents admitted to having frequently cheated in at least one form of assessed academic misconduct. Only three students admitted to having reported another student for cheating. For most of the questions, there was no significant difference in the responses among Croatian students. However, significant differences were found in most responses between Croatian students and their international counterparts, who were significantly less likely to engage in dishonest behaviours. No individual factor was found to correlate with the incidence of self-admitted dishonest behaviour. Frequent cheaters evaluated academic dishonesty significantly more leniently than those who did not cheat. Conclusion Academic dishonesty of university students does not begin in higher education; students come to medical schools ready to cheat. (shrink)