The aim of this Swedish study was to develop the concept of moral sensitivity in health care practice. This process began with an overview of relevant theories and perspectives on ethics with a focus on moral sensitivity and related concepts, in order to generate a theoretical framework. The second step was to construct a questionnaire based on this framework by generating a list of items from the theoretical framework. Nine items were finally selected as most appropriate and consistent with the (...) research team’s understanding of the concept of moral sensitivity. The items were worded as assumptions related to patient care. The questionnaire was distributed to two groups of health care personnel on two separate occasions and a total of 278 completed questionnaires were returned. A factor analysis identified three factors: sense of moral burden, moral strength and moral responsibility. These seem to be conceptually interrelated yet indicate that moral sensitivity may involve more dimensions than simply a cognitive capacity, particularly, feelings, sentiments, moral knowledge and skills. (shrink)

Stress in health care is affected by moral factors. When people are prevented from doing ‘good’ they may feel that they have not done what they ought to or that they have erred, thus giving rise to a troubled conscience. Empirical studies show that health care personnel sometimes refer to conscience when talking about being in ethically difficult everyday care situations. This study aimed to construct and validate the Stress of Conscience Questionnaire (SCQ), a nine-item instrument for assessing stressful situations (...) and the degree to which they trouble the conscience. The items were based on situations previously documented as causing negative stress for health care workers. Content and face validity were established by expert panels and pilot studies that selected relevant items and modified or excluded ambiguous ones. A convenience sample of 444 health care personnel indicated that the SCQ had acceptable validity and internal consistency (Cronbach’s alpha exceeded 0.83 for the overall scale). Explorative factor analysis identified and labelled two factors: ‘internal demands’ and ‘external demands and restrictions’. The findings suggest that the SCQ is a concise and practical instrument for use in various health care contexts. (shrink)

Different ideas of the normative relevance of autonomy can give rise to profoundly different action-guiding principles in healthcare. If autonomy is seen as a value rather than as a right, it can be argued that patients’ decisions should sometimes be overruled in order to protect or promote their own autonomy. We refer to this as paternalism in the name of autonomy. In this paper, we discuss different elements of autonomy (decision-making capacity, efficiency, and authenticity) and arguments in favor of paternalism (...) for the sake of autonomy that have been proposed in the bioethical debate. We argue that if autonomy is valuable, then paternalism for the sake of autonomy may be justified. However, policies allowing paternalism in the name of autonomy may be self-defeating. (shrink)

Plagiarism is a major problem for research. There are, however, divergent views on how to define plagiarism and on what makes plagiarism reprehensible. In this paper we explicate the concept of “plagiarism” and discuss plagiarism normatively in relation to research. We suggest that plagiarism should be understood as “someone using someone else’s intellectual product, thereby implying that it is their own” and argue that this is an adequate and fruitful definition. We discuss a number of circumstances that make plagiarism more (...) or less grave and the plagiariser more or less blameworthy. As a result of our normative analysis, we suggest that what makes plagiarism reprehensible as such is that it distorts scientific credit. In addition, intentional plagiarism involves dishonesty. There are, furthermore, a number of potentially negative consequences of plagiarism. (shrink)

Every day situations arising in health care contain ethical issues influencing care providers' conscience. How and to what extent conscience is influenced may differ according to how conscience is perceived. This study aimed to explore the relationship between perceptions of conscience and stress of conscience among care providers working in municipal housing for elderly people. A total of 166 care providers were approached, of which 146 (50 registered nurses and 96 nurses' aides/enrolled nurses) completed a questionnaire containing the Perceptions of (...) Conscience Questionnaire and the Stress of Conscience Questionnaire. A multivariate canonical correlation analysis was conducted. The first two functions emerging from the analysis themselves explained a noteworthy amount of the shared variance (25.6% and 17.8%). These two dimensions of the relationship were interpreted either as having to deaden one's conscience relating to external demands in order to be able to collaborate with coworkers, or as having to deaden one's conscience relating to internal demands in order to uphold one's identity as a `good' health care professional. (shrink)

Although organizational and situational factors have been found to predict burnout, not everyone employed at the same workplace develops it, suggesting that becoming burnt out is a complex, multifaceted phenomenon. The aim of this study was to elucidate perceptions of conscience, stress of conscience, moral sensitivity, social support and resilience among two groups of health care personnel from the same workplaces, one group on sick leave owing to medically assessed burnout (n = 20) and one group who showed no indications (...) of burnout (n = 20). The results showed that higher levels of stress of conscience, a perception of conscience as a burden, having to deaden one’s conscience in order to keep working in health care and perceiving a lack of support characterized the burnout group. Lower levels of stress of conscience, looking on life with forbearance, a perception of conscience as an asset and perceiving support from organizations and those around them (social support) characterized the non-burnout group. (shrink)

The number of legal and nonlegal ethical regulations in the biomedical field has increased tremendously, leaving present-day practitioners and researchers in a virtual crossfire of legislations and guidelines. Judging by the production and by the way these regulations are motivated and presented, they are held to be of great importance to ethical practice. This view is shared by many commentators. For instance, Commons and Baldwin write that, within the nursing profession, patient care can be performed unethically or ethically depending on (...) the professional standards the nurses have set for themselves. They also hold that such standards are set when nurses become aware of the ethical codes available. As nurses are often not familiar with the codes, they do not all conform to them. Commons and Baldwin argue that nurses' ability to deal with ethical dilemmas is effectively secured with education on guidelines, creating a “barrier” between personal and professional values. (shrink)

Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents (ethics guidelines), overseeing bodies (research ethics committees) and formal procedures (informed consent). The process of institutionalizing distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure the trustworthiness of the research system. This article examines some limitations of this approach. (...) First, past atrocities cannot provide the necessary justification unless institutionalized distrust is a necessary or efficient means to prevent future ones – and there are several reasons to doubt this. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers – the very qualities that institutionalized distrust calls into question. Third, ethics guidelines cannot, as is sometimes assumed, educate or guide researchers in moral behaviour unless they already possess considerable capacity for moral judgment. Fourth, institutionalized distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences if their moral competence is allowed to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and are not obstructed from so doing. (shrink)

Most life science research entails dual-use complexity and may be misused for harmful purposes, e.g. biological weapons. The Precautionary Principle applies to special problems characterized by complexity in the relationship between human activities and their consequences. This article examines whether the principle, so far mainly used in environmental and public health issues, is applicable and suitable to the field of dual-use life science research. Four central elements of the principle are examined: threat, uncertainty, prescription and action. Although charges against the (...) principle exist – for example that it stifles scientific development, lacks practical applicability and is poorly defined and vague – the analysis concludes that a Precautionary Principle is applicable to the field. Certain factors such as credibility of the threat, availability of information, clear prescriptive demands on responsibility and directives on how to act, determine the suitability and success of a Precautionary Principle. Moreover, policy-makers and researchers share a responsibility for providing and seeking information about potential sources of harm. A central conclusion is that the principle is meaningful and useful if applied as a context-dependent moral principle and allowed flexibility in its practical use. The principle may then inspire awareness-raising and the establishment of practical routines which appropriately reflect the fact that life science research may be misused for harmful purposes. (shrink)

In the past decade, the perception of a bioterrorist threat has increased and created a demand on life scientists to consider the potential security implications of dual use research. This article examines a selection of proposed moral obligations for life scientists that have emerged to meet these concerns and the extent to which they can be considered reasonable. It also describes the underlying reasons for the concerns, how they are managed, and their implications for scientific values. Five criteria for what (...) constitutes preventable harm are suggested and a number of proposed obligations for life scientists are considered against these criteria, namely, the obligations to prevent bioterrorism; to engage in response activities; to consider negative implications of research; not to publish or share sensitive information; to oversee and limit access to dangerous material; and to report activities of concern. Although bioterrorism might be perceived as an imminent threat, the analysis illustrates that this is beyond the responsibility of life scientists either to prevent or to respond to. Among the more reasonable obligations are duties to consider potential negative implications of one's research, protect access to sensitive material, technology and knowledge, and report activities of concern. Responsibility, therefore, includes obligations concerned with preventing foreseeable and highly probable harm. A central conclusion is that several of the proposed obligations are reasonable, although not unconditionally. (shrink)

This paper concerns the responsibility of co-authors in cases of scientific misconduct. Arguments in research integrity guidelines and in the bioethics literature concerning authorship responsibilities are discussed. It is argued that it is unreasonable to claim that for every case where a research paper is found to be fraudulent, each author is morally responsible for all aspects of that paper, or that one particular author has such a responsibility. It is further argued that it is more constructive to specify what (...) task responsibilities come with different roles in a project and describe what kinds of situations or events call for some kind of action, and what the appropriate actions might be. (shrink)

This paper highlights a feature common to many ethical guidelines—namely, the idea that the interests of the individual shall always prevail over the interests of science and society. The paper presents how some major ethical guidelines treat the balancing of research interests against those of research subjects and spells out the difficulties in interpreting the principle of the primacy of the individual in a way that can be action-guiding. It suggests various alternative interpretations of the primacy of the individual and (...) argues that they do not hold. Finally, the implications of this analysis for ethical guidelines are discussed. (shrink)

The aim of the present study was to describe and explore the perception of ethical guidelines and their role in ethical competence-building among Swedish physicians and research nurses. Twelve informants were interviewed in depth. The results demonstrated that the informants had a critical attitude towards ethical guidelines and claimed to make little use of them in practical moral judgements. Ethical competence was seen primarily as character-building, related to virtues such as being empathic, honest and loyal to patients. Ethical competence was (...) assumed to be learned through good examples, role models and practical experience, while ethical guidelines were not perceived as valuable in this process. In order to improve the staff's familiarity with and the usability of ethical guidelines, the workplace needs to provide opportunities for ethical dialogues. In such discussions, argumentation can improve, virtues can be developed and guidelines can be usefully invoked. (shrink)

This paper describes and discusses the phenomenon ‘predatory publishing’, in relation to both academic journals and books, and suggests a list of characteristics by which to identify predatory journals. It also raises the question whether traditional publishing houses have accompanied rogue publishers upon this path. It is noted that bioethics as a discipline does not stand unaffected by this trend. Towards the end of the paper it is discussed what can and should be done to eliminate or reduce the effects (...) of this development. The paper concludes that predatory publishing is a growing phenomenon that has the potential to greatly affect both bioethics and science at large. Publishing papers and books for profit, without any genuine concern for content, but with the pretence of applying authentic academic procedures of critical scrutiny, brings about a worrying erosion of trust in scientific publishing. (shrink)

Health care often involves ethically difficult situations that may disquiet the conscience. The purpose of this study was to develop a questionnaire for identifying various perceptions of conscience within a framework based on the literature and on explorative interviews about perceptions of conscience (Perceptions of Conscience Questionnaire). The questionnaire was tested on a sample of 444 registered nurses, enrolled nurses, nurses’ assistants and physicians. The data were analysed using principal component analysis to explore possible dimensions of perceptions of conscience. The (...) results showed six dimensions, found also in theory and empirical health care studies. Conscience was perceived as authority, a warning signal, demanding sensitivity, an asset, a burden and depending on culture. We conclude that the Perceptions of Conscience Questionnaire is valid for assessing some perceptions of conscience relevant to health care providers. (shrink)

The purpose of retracting published papers is to maintain the integrity of academic research. Recent work in research ethics has devoted important attention to how to improve the system of paper retraction. In this context, the focus has primarily been on how to handle fraudulent or flawed research papers and how to encourage the retraction of papers based on honest mistakes. Less attention has been paid to whether papers that report unethical research—for example, research performed without appropriate concern for the (...) moral rights and interests of the research participants—should be retracted. The aim of this paper is to examine to what extent retraction policies of academic journals and publishers address retractions of unethical research and to discuss critically various policy options and the reasons for accepting them. The paper starts by reviewing retraction policies of academic publishers. The results show that many journals do not have explicit policies for how to handle unethical research. Against this background, we then discuss four normative arguments for why unethical research should be retracted. In conclusion, we suggest a retraction policy in light of our empirical and normative investigations. (shrink)

In spite of the growing interest in nursing ethics, few studies have focused on ethical dilemmas experienced by nurses working with clinical studies as ‘research nurses’. The aim of the present study was to describe and explore ethical dilemmas that Swedish research nurses experience in their day-to-day work. In a qualitative study a purposeful sample of six research nurses from five wards of differing disciplines in four Swedish hospitals was interviewed. The analysis displayed several examples of ethical dilemmas, primarily tensions (...) between the nurses’ obligations to the study and to the patients involved. A guiding moral principle for the nurses was patient-centeredness, where the interest of research must not override the interest of the patient. In situations where tensions between research and patient interests occurred, and doctors and nurses disagreed upon the judgement, the nurses sometimes chose to follow the doctors’ advice, and thus acted against their own moral judgment. Such situations seemed to create feelings of moral distress among the nurses. They described their profession as being ‘invisible’ and as lacking opportunities for ethical competence building. The conclusion is that research nurses frequently experience severe and difficult ethical dilemmas in their daily work. They need to be acknowledged as a particular profession in the health care organisation and encouraged to develop their specific ethical competence. (shrink)

BackgroundInvoluntary treatment is a key issue in healthcare ethics. In this study, ethical issues relating to involuntary psychiatric treatment are investigated through interviews with Swedish psychiatrists.MethodsIn-depth interviews were conducted with eight Swedish psychiatrists, focusing on their experiences of and views on compulsory treatment. In relation to this, issues about patient autonomy were also discussed. The interviews were analysed using a descriptive qualitative approach.ResultsThe answers focus on two main aspects of compulsory treatment. Firstly, deliberations about when and why it was justifiable (...) to make a decision on involuntary treatment in a specific case. Here the cons and pros of ordering compulsory treatment were discussed, with particular emphasis on the consequences of providing treatment vs. refraining from ordering treatment. Secondly, a number of issues relating to background factors affecting decisions for or against involuntary treatment were also discussed. These included issues about the Swedish Mental Care Act, healthcare organisation and the care environment.ConclusionsInvoluntary treatment was generally seen as an unwanted exception to standard care. The respondents’ judgments about involuntary treatment were typically in line with Swedish law on the subject. However, it was also argued that the law leaves room for individual judgments when making decisions about involuntary treatment. Much of the reasoning focused on the consequences of ordering involuntary treatment, where risk of harm to the therapeutic alliance was weighed against the assumed good consequences of ensuring that patients received needed treatment. Cases concerning suicidal patients and psychotic patients who did not realise their need for care were typically held as paradigmatic examples of justified involuntary care. However, there was an ambivalence regarding the issue of suicide as it was also argued that risk of suicide in itself might not be sufficient for justified involuntary care. It was moreover argued that organisational factors sometimes led to decisions about compulsory treatment that could have been avoided, given a more patient-oriented healthcare organisation. (shrink)

Our claim in this paper is that not being identified as the data source might cause harm to a person or group. Therefore, in some cases the default of anonymisation should be replaced by a careful deliberation, together with research subjects, of how to handle the issues of identification and confidentiality. Our prime example in this article is community participatory research and similar endeavours on indigenous groups. The theme, content and aim of the research, and the question of how to (...) handle property rights and ownership of research results, as well as who should be in charge of the research process, including the process of creating anonymity, should all be answered, before anonymity is accepted. (shrink)

Informed consent is central to modern research ethics. Informed consent procedures have mainly been justified in terms of respect for autonomy, the core idea being that it should be every competent individual’s right to decide for herself whether or not to participate in scientific studies. A number of conditions are normally raised with regard to morally valid informed consent. These include that potential research subjects get adequate information, understand those aspects that are relevant to them, and, based on that information, (...) make a voluntary decision whether or not to participate. These conditions are meant to guarantee that participation is genuinely the individual’s own choice and is coherent with his or her authentic interests. (shrink)

Should people be involved as active participants in longitudinal medical research, as opposed to remaining passive providers of data and material? We argue in this article that misconceptions of ‘autonomy’ as a kind of feat rather than a right are to blame for much of the confusion surrounding the debate of dynamic versus broad consent. Keeping in mind two foundational facts of human life, freedom and dignity, we elaborate three moral principles – those of autonomy, integrity and authority – to (...) better see what is at stake. Respect for autonomy is to recognize the other's right to decide in matters that are important to them. Respect for integrity is to meet, in one's relationship with the other, their need to navigate the intersection between private and social life. Respect for authority is to empower the other – to help them to cultivate their responsibility as citizens. On our account, to force information onto someone who does not want it is not to respect that person's autonomy, but to violate integrity in the name of empowerment. Empowerment, not respect for autonomy, is the aim that sets patient-centred initiatives employing a dynamic consent model apart from other consent models. Whether this is ultimately morally justified depends on whether empowerment ought to be a goal of medical research, which is questionable. (shrink)

Antibiotic resistance (AR) is a major threat to public health and healthcare worldwide. In this article, we analyse and discuss the claim that taking actions to minimize AR is everyone's responsibility, focusing on individual moral responsibility. This should not be merely interpreted as a function of knowledge of AR and the proper use of antibiotics. Instead, we suggest a circumstantial account of individual responsibility for AR, where individuals do or do not engage in judicious antibiotic behaviour with different degrees of (...) voluntariness. Furthermore, we suggest a notion of responsibility as a virtue, in which individuals have the opportunity to develop a sensitivity towards the AR theme and, consequently, are capable of engaging, actively and voluntarily, in judicious antibiotic behaviour. The development of such sensitivity depends on the creation of adequate circumstances, that is individual capacities and availability of resources. (shrink)

Decision-making capacity is a key concept in contemporary healthcare ethics. Previous research has mainly focused on philosophical, conceptual issues or on evaluation of different tools for assessing patients’ capacity. The aim of the present study is to investigate how the concept and its normative role are understood in Swedish psychiatric care. Of special interest for present purposes are the relationships between decisional capacity and psychiatric disorders and between health law and practical ethics.

Our starting point in this article is the debate between John Harris and Iain Brassington on whether or not there is a duty to take part in scientific research. We consider the arguments that have been put forward based on fairness and a duty to rescue, and suggest an alternative justification grounded in a hypothetical agreement: that is, because effective healthcare cannot be taken for granted, but requires continuous medical research, and nobody knows what kind of healthcare they will need, (...) participating in research should be viewed from the perspective of a social contract, based on our mutual need for medical advances. (shrink)

People taking part in research vary in the extent to which they understand information concerning their participation. Since they may choose to limit the time and effort spent on such information, lack of understanding is not necessarily an ethical problem. Researchers who notice a lack of understanding are in the quandary of not knowing whether this is due to flaws in the information process or to participants’ deliberate choices. We argue that the two explanations call for different responses.A tool for (...) identifying those research participants who want limited information is presented. This consists of a restricted number of questions about trust in and appraisal of research, priority of time and privacy, and perception of a duty to participate. It is argued that an important group of participants who purposely lack understanding of the study can be identified with this tool. Some limitations to this approach are also discussed. (shrink)

Sometimes participants in research collaboration die before the paper is accepted for publication. The question we raise in this paper is how authorship should be handled in such situations. First, the outcome of a literature survey is presented. Taking this as our starting point, we then go on to discuss authorship of the dead in relation to the requirements of the Vancouver rules. We argue that in principle the deceased can meet the requirements laid down in these authorship guidelines. However, (...) to include a deceased researcher as author requires a strong justification. The more the person has been involved in the research and writing process before he or she passes away, the stronger the justification for inclusion. (shrink)

In Sweden, most patients are recruited into biobank research by non-researcher doctors. Patients' trust in doctors may therefore be important to their willingness to participate. We suggest a model of trust that makes sense of such transitions of trust between domains and distinguishes adequate trust from mistaken trust. The unique position of doctors implies, we argue, a Kantian imperfect duty to compensate for patients' mistaken trust. There are at least three kinds of mistaken trust, each of which requires a different (...) set of countermeasures. First, trust is mistaken when necessary competence is lacking; the competence must be developed or the illusion dispelled. Second, trust is irrational whenever the patient is mistaken about his actual reasons for trusting. Care must therefore be taken to support the patient's reasoning and moral agency. Third, some patients inappropriately trust doctors to recommend only research that will benefit them directly. Such trust should be counteracted by nurturing a culture where patients expect to be asked occasionally to contribute to the common good. (shrink)

In a previous paper in the Journal of Medical Ethics, the authors argued that the research ethical principle stating that the individual shall have priority over science, found in many guidelines, is utterly unclear and because of this should be explicated or otherwise deleted. In a recent commentary, Parker argued that this leaves us defending a position that would allow totalitarian regimes to pursue glory at the expense of its citizens. The present response addresses this and similar accusations.

In 2011, for the first time ever, two scientific journals were asked not to publish research papers in full detail. The research in question was on the H5N1 influenza virus (bird flu), and the concern was that the expected public health benefits of disseminating the findings did not outweigh the potential harm should the knowledge be misused for malicious purposes. This constraint raises important ethical concerns as it collides with scientific freedom and openness. In this article, we argue that constraining (...) the dissemination of dual-use knowledge can in certain cases be justified because, for example: scientists have a responsibility for potentially harmful consequences of their research; the public need not always know of all scientific discoveries; uncertainty about the risks of harm may warrant precaution; and expected benefits do not always outweigh potential harm. However, the constraints in question are not absolute but can be both temporary and partial. We propose three core aspects for an ethics of dual-use dissemination: dual-use awareness, precaution, and acknowledgment of conflicting values. Additionally, to help scientists understand when constraints on dissemination may be justified we suggest three corresponding conditions that prompt scientists to recognize dual-use material or research, consider the potential impact of dual-use knowledge dissemination, and acknowledge and respond to external dissemination concerns. (shrink)

Due to the alarming rise of antibiotic resistance, medically unwarranted use of antibiotics has assumed new moral significance. In this paper, a thematic content analysis of focus group discussions was conducted to explore lay people’s views on the moral challenges posed by antibiotic resistance. The most important finding is that lay people are morally sensitive to the problems entailed by antibiotic resistance. Participants saw the decreasing availability of effective antibiotics as a problem of justice. This involves individual as well as (...) collective moral responsibility. Yet, holding agents responsible for their use of antibiotics involves varying degrees of demandingness. In our discussion, these findings are related to the contemporary ethical debate on antibiotic resistance and two proposals for the preservation of antibiotic effectiveness are compared to and evaluated against participants’ views. (shrink)

The management of commons is now at the centre of researchers’ attention in many branches of science, particularly those related to the human or social sciences. This paper seeks to demonstrate how civil society participation in common goods or resources is not only possible but is also desirable for society because of the medium and long-term benefits it offers involved and/or affected parties. To this end, we examine the falsity of the discourse underlying the supposed incompetence of civil society to (...) cooperate interpersonally in the pursuit of common objectives, and also analyse a specific example of the necessary and possible participation of civil society in managing common goods through biobanks.La gestión del bien común se ha convertido actualmente en centro de atención para diferentes ramas de la ciencia, especialmente aquellas vinculadas con lo humano y lo social. El presente estudio busca mostrar cómo la participación de la sociedad civil en la gestión de este tipo de bienes o recursos no sólo es posible, sino deseable para la sociedad por los beneficios que reporta a las partes implicadas y/o afectadas a medio y largo plazo. Para ello, se atenderá la falsedad del discurso sobre el cual se asienta la supuesta incompetencia de la sociedad civil para poder cooperar interpersonalmente en busca de objetivos comunes, así como se analizará un ejemplo concreto de la necesaria y posible participación de la sociedad civil en la gestión del bien común a través de los centros de recursos biológicos (brcs). (shrink)

In this article, it is claimed that the protective provisions for adults with impaired decision-making capacity are misguided, insofar as they do not conclusively state whether research on this group should be permitted only as an exception, and as they arbitrarily allow for some groups to benefit from such research while others will not. Moreover, the presumed or former will of the subject is given insufficient weight, and the minimal risk standard does not make sense in this context. Because of (...) these problems, the present guidelines allow for the possibility of vulnerable people being exploited, something that is hidden behind a guise of solidarity. Instead we need to address the real issues at stake by rewriting the present statutes. It is suggested that new guidelines should be in some continuity with earlier efforts. However, in order to protect these subjects there is additional need for appointed representatives who monitor research and for legal obligations to compensate for any injuries suffered. Without these or similar measures we won't have an adequate system in place for the protection of non-benefiting persons who are unable to consent to research. (shrink)

We do not know how much clinical physicians carrying out clinical trials in oncology and haematology struggle with ethical concerns. To our knowledge, no empirical research exists on these questions in a Nordic context. Therefore, this study aims to learn what kinds of ethical challenges physicians in Sweden, Denmark and Finland face when caring for patients in clinical trials; and what strategies, if any, they have developed to deal with them. The main findings were that clinical cancer trials pose ethical (...) challenges related to autonomy issues, unreasonable hope for benefits and the therapeutic misconception. Nevertheless, some physicians expressed that struggling with such challenges was not of great concern. This conveys a culture of hope where health care professionals and patients uphold hope and mutually support belief in clinical trials. This culture being implicit, physicians need opportunities to deliberately reflect over the characteristics that should constitute this culture. (shrink)

A wide variety of bioethical themes have recently been debated and researched in Sweden, including genetic screening, HPV vaccination strategies, end-of-life care, injustices and priority setting in healthcare, dual-use research, and the never-ending story of scientific fraud. Also, there are some new events related to Swedish biobanking that might be of general interest. Here we will concentrate on four themes: end-of-life care, dual-use research, scientific fraud, and biobanking.

There is a growing interest in ethical competence-building within nursing and health care practising. This tendency is accompanied by a remarkable growth of ethical guidelines. Ethical demands have also been laid down in laws. Present-day practitioners and researchers in health care are thereby left in a virtual cross-fire of various legislations, codes, and recommendations, all intended to guide behaviour. The aim of this paper was to investigate the role of ethical guidelines in the process of ethical competence-building within health care (...) practice and medical research. A conceptual and critical philosophical analysis of some paragraphs of the Helsinki Declaration and of relevant literature was performed. Three major problems related to ethical guidelines were identified, namely, the interpretation problem (there is always a gap between the rule and the practice, which implies that ethical competence is needed for those who are to implement the guidelines); the multiplicity problem (the great number of codes, declarations, and laws might pull in different directions, which may confuse the health care providers who are to follow them); and the legalisation problem (ethics concerns may take on a legal form, where ethical reflection is replaced by a procedure of legal interpretations). Virtue ethics might be an alternative to a rule based approach. This position, however, can turn ethics into a tacit knowledge, leading to poorly reflected and inconsistent ethical decisions. Ethical competence must consist of both being (virtues) and doing (rules and principles), but also of knowing (critical reflection), and therefore a communicative based model is suggested. (shrink)

Respect for autonomy is typically considered a key reason for allowing physician assisted suicide and euthanasia. However, several recent papers have claimed this to be grounded in a misconception of the normative relevance of autonomy. It has been argued that autonomy is properly conceived of as a value, and that this makes assisted suicide as well as euthanasia wrong, since they destroy the autonomy of the patient. This paper evaluates this line of reasoning by investigating the conception of valuable autonomy. (...) Starting off from the current debate in end-of-life care, two different interpretations of how autonomy is valuable is discussed. According to one interpretation, autonomy is a personal prudential value, which may provide a reason why euthanasia and assisted suicide might be against a patient’s best interests. According to a second interpretation, inspired by Kantian ethics, being autonomous is unconditionally valuable, which may imply a duty to preserve autonomy. We argue that both lines of reasoning have limitations when it comes to situations relevant for end-of life care. It is concluded that neither way of reasoning can be used to show that assisted suicide or euthanasia always is impermissible. (shrink)