The autonomy of chronic patients in Iranian hospitals is challenged by impaired functioning resulting from chronic illness, a negative image in society, and effects related to hospitalization. Comprehensive interviews and observations of 34 patients, nurses, and physicians were performed to assess the autonomy of chronic patients in Iran. Conceptualization, constant comparison, and the combination of data resulted in the identification of 5 main categories related to autonomy: welcoming paternalism, self-expression, self-proof, shared decision making, and self-determination. Authority scrambling was a central (...) category describing chronic patients’ perceptions of their autonomy during hospitalization. These patients sought to maintain their independence despite serious threats to their autonomy. (shrink)

Do extraordinary crisis situations requiring life-and-death decisions create a “state of exception” in which ordinary social, political, and ethical norms must be altered or suspended altogether? Daniel Sulmasy contends that the extraordinary circumstances of a pandemic do not require abandoning or altering ethical values and principles. Rather, “ethics as usual” ought to guide policy formation and clinical decision-making. One critical question raised by the current pandemic, and which stresses ordinary ethical standards, is whether ventilators or other scarce life-sustaining resources may (...) be unilaterally withdrawn from a patient in order to be reallocated to another who is estimated to have a superior chance of survival or better satisfies other triage criteria. In this type of situation, it is unclear what constitutes “ethics as usual.”. (shrink)

The experience with genetically modified foods has been prominent in motivating science, industry and regulatory bodies to address the social and ethical dimensions of nanotechnology. The overall objective is to gain the general public’s acceptance of nanotechnology in order not to provoke a consumer boycott as it happened with genetically modified foods. It is stated implicitly in reports on nanotechnology research and development that this acceptance depends on the public’s confidence in the technology and that the confidence is created on (...) the basis of information, education, openness and debate about scientific and technological developments. Hence, it is assumed that informing and educating the public will create trust, which will consequently lead to an acceptance of nanotechnology. Thus, the humanities and social sciences are seen as tools to achieve public acceptance. In this paper, the author argues that this is a narrow apprehension of the role of the humanities and social sciences. The humanities and social sciences have a critical function asking fundamental questions and informing the public about these reflections. This may lead to scepticism, however, the motivation for addressing the social and ethical dimensions of nanotechnology should not be public acceptance but informed judgement. The author illustrates this critical function by discussing the role, motivation and contribution of ethics as an example. Lastly, the author shows that a possible strategy for incorporating the humanities and the social sciences into nanotechnology research and development is Real-Time Technology Assessment, where the purpose is to integrate natural science and engineering investigations with ethical, legal and social science from the outset. (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)

This paper explores an emerging sub-field of both empirical bioethics and experimental philosophy, which has been called “experimental philosophical bioethics” (bioxphi). As an empirical discipline, bioxphi adopts the methods of experimental moral psychology and cognitive science; it does so to make sense of the eliciting factors and underlying cognitive processes that shape people’s moral judgments, particularly about real-world matters of bioethical concern. Yet, as a normative discipline situated within the broader field of bioethics, it also aims to contribute to substantive (...) ethical questions about what should be done in a given context. What are some of the ways in which this aim has been pursued? In this paper, we employ a case study approach to examine and critically evaluate four strategies from the recent literature by which scholars in bioxphi have leveraged empirical data in the service of normative arguments. (shrink)

Increasing emphasis on genetic research means that growing numbers of human research projects in Australia will involve complex issues related to genetic privacy, familial information and genetic epidemiology. The Office of Population Health Genomics (Department of Health, Western Australia) hosted an interactive workshop to explore the ethical issues involved in the disclosure of genetic information, where researchers and members of human research ethics committees (HRECs) were asked to consider several case studies from an ethical perspective. Workshop participants used a variety (...) of approaches to examine the complex ethical issues encountered, but did not consistently refer to the values and principles outlined in the National Statement on Ethical Conduct in Human Research (NHMRC 2007) or apply rational ethical approaches. Overall, the data suggested that both researchers and HREC members may benefit from further education and support regarding the application of ethical frameworks to the issues encountered in genetic research. (shrink)

Informed consent is reviewed as it applies to psychiatric patients. Although new legislation, such as the Mental Health Act 1983, provides a useful safeguard for the protection of the civil rights of patients, it could actually reduce their humane care unless applied with sensitivity for the nature of their unique difficulties. In order to guard against this possibility, we suggest that legal requirements should be considered in light of the ethical principles which underlie them. Three principles are considered: those of (...) autonomy (freedom); beneficence (paternalism); and the fiduciary principle (partnership). Psychotherapy is offered as a model for informed consent, which might be generalised to other clinical situations. (shrink)

The aim of this study was to explore the ethical challenges in home mechanical ventilation based on a secondary analysis of qualitative empirical data. The data included perceptions of healthcare professionals in hospitals and community health services and family members of children and adults using home mechanical ventilation. The findings show that a number of ethical challenges, or dilemmas, arise at all levels in the course of treatment: deciding who should be offered home mechanical ventilation, respect for patient and family (...) wishes, quality of life, dignity and equal access to home mechanical ventilation. Other challenges were the impacts home mechanical ventilation had on the patient, the family, the healthcare services and the allocation of resources. A better and broader understanding of these issues is crucial in order to improve the quality of care for both patient and family and assist healthcare professionals involved in home mechanical ventilation to make decisions for the good of the patient and his or her family. (shrink)

Efforts to reform medical education have emphasized the need to formalize instruction in medical ethics. However, the discipline of medical ethics education is still searching for an acceptable identity among North American medical schools; in these schools, no real consensus exists on its definition. Medical educators are grappling with not only what to teach (content) in this regard, but also with how to teach (process) ethics to the physicians of tomorrow. A literature review focused on medical ethics education among North (...) American medical schools reveals that instruction in ethics is considered to be vitally important for medical students. Agreement by medical educators on a possible core curriculum in ethics should be explored. To develop such a curriculum, deliberative curriculum inquiry by means of a targeted Delphi technique may be a useful methodology. However, the literature reveals that medical curricular change is notoriously slow. General implications for medical ethics education as a discipline are discussed. (shrink)

In their book Spare Parts, published in 1992, Fox and Swazey criticized various aspects of organ transplantation, including the routinization of the procedure, ignorance regarding its inherent uncertainties, and the ethos of transplant professionals. Using this work as a frame of reference, we analyzed articles on organ transplantation published in internal medicine and transplantation journals between 1995 and 2008 to see whether Fox and Swazey’s critiques of organ transplantation were still relevant.

During the past ten years Integrative Social Contracts Theory (ISCT) has become part of the repertoire of specialized decision-oriented theories in the business ethics literature. The intention here is to (1)␣provide a brief overview of the structure and strengths of ISCT; (2) identify recurring themes in the extensive commentary on the theory including brief mention of how ISCT has been applied outside the business ethics literature; (3) describe where research appears to be headed; and (4) specify challenges faced by those (...) who seek to reform ISCT. Key themes in the critiquing literature relate to (a) the identification process for hypernorms; (b) justification of the recognition of hypernorms; (c) proposals for considering meso or meta norms; (d)␣clarification of the relationship between stakeholder concepts and ISCT; (e) problems with potentially unoccupied moral free space; (f) sources of ethical obligation within the ISCT framework; and (g) the potential role for concepts of stakeholder dialogue and engagement. (shrink)

Gaining informed consent among marginalized groups that include decisionally incapacitated individuals and those outside of the researcher's own geo-social and ethnic background still challenges many researchers. We suggest that there is a need for consideration of a different approach to research ethics in international settings. Based on extensive field work in West Africa on medical knowledge transfers and patient–healer relationships, this paper will discuss the challenges posed in obtaining informed individual consent in international settings. It is argued that while being (...) on the whole convincing, the top-down approach of the proposed solutions, which clearly dominates the participative approach, fails in building sustainable capacity, decision-making competency, and empowerment in the communities in which the research is conducted. Using appropriate decision aids can help resolve these issues. (shrink)

The predominant ethical framework for addressing reproductive decisions in the maternal–fetal relationship is respect for the woman's autonomy. However, when a pregnant schizophrenic woman lacks such autonomy, healthcare providers try to both protect her and respect her preferences. By delineating etic (objective) and emic (subjective) perspectives on vulnerability, I argue that options which balance both perspectives are preferable and that acting on etic perspectives to the exclusion of emic considerations is rarely justified. In negotiating perspectives, we balance the etic commitment (...) to protect the vulnerable patient and her fetus from harm with the emic concern to empower a decisionally incapacitated woman. Equilibrium is best achieved by nurturing interdependent relationships that empower and protect the vulnerable woman. The analysis points to the need for better social support for mentally ill patients. (shrink)

A recent administrative law decision in Victoria, Australia, applied double effect reasoning in a novel way. Double effect reasoning has hitherto been used to legitimate treatments which may shorten life but where the intent of treatment is pain relief. The situation reviewed by the Victorian tribunal went further, supporting actions where a doctor agrees to provide pentobarbitone to a patient at some time in the future if the patient feels at that time that his pain is unbearable and he wants (...) to end his life. The offer to provide the drug was described as a palliative treatment in that it gave reassurance and comfort to the patient. Double effect reasoning was extended in this instance to encompass potentially facilitating a patient’s death. This extension further muddies the murky double effect reasoning waters and creates another challenge to this concept. (shrink)

Monshi and Zieglmayer's case study presents Sri Lankan participants as having views on the privacy of health information that differ radically from those commonly found in Western nations. This article explores 2 questions that their case study raises for the ethical review of research in international settings: First, are allegedly universal ethical principles - of the sort promulgated in the Belmont Report (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978) - useful in international settings?, (...) and second, how should research oversight bodies address the challenges that arise in international behavioral and social science research? (shrink)

Autonomous vehicles —and accidents they are involved in—attest to the urgent need to consider the ethics of artificial intelligence. The question dominating the discussion so far has been whether we want AVs to behave in a ‘selfish’ or utilitarian manner. Rather than considering modeling self-driving cars on a single moral system like utilitarianism, one possible way to approach programming for AI would be to reflect recent work in neuroethics. The agent–deed–consequence model :3–20, 2014a, Behav Brain Sci 37:487–488, 2014b) provides a (...) promising descriptive and normative account while also lending itself well to implementation in AI. The ADC model explains moral judgments by breaking them down into positive or negative intuitive evaluations of the agent, deed, and consequence in any given situation. These intuitive evaluations combine to produce a positive or negative judgment of moral acceptability. For example, the overall judgment of moral acceptability in a situation in which someone committed a deed that is judged as negative would be mitigated if the agent had good intentions and the action had a good consequence. This explains the considerable flexibility and stability of human moral judgment that has yet to be replicated in AI. This paper examines the advantages and disadvantages of implementing the ADC model and how the model could inform future work on ethics of AI in general. (shrink)

This article analyzes appropriate public policies for enhancement use of two most important stimulant drugs: Ritalin (methylphenidate) and Adderall (mixed amphetamine salts). The author argues that appropriate regulation of cognition enhancement drugs cannot be a result of a general discussion on cognitive enhancements as such, but has to be made on a case-by-case basis. Starting from the recently proposed taxation approach to cognition enhancement drugs, the author analyzes available, moderately permissive models of regulation. After a thorough analysis of relevant characteristics (...) of methylphenidate and amphetamine, the author concludes that a moderately liberal permissive regulation of enhancement use by healthy adults might be appropriate for extended release forms of methylphenidate. However, due to their danger profile, amphetamine and instant release forms of methylphenidate should not be made readily available to healthy adults and would need to be prohibited. (shrink)

The U.S. National Institute of Allergies and Infectious Diseases and the National Institute of Mental Health have a new research priority: inclusion of terminally ill persons living with HIV in HIV cure-related research. For example, the Last Gift is a clinical research study at the University of California San Diego for PLWHIV who have a terminal illness, with a prognosis of less than 6 months. As end-of-life HIV cure research is relatively new, the scientific community has a timely opportunity to (...) examine the related ethical challenges. Following an extensive review of the EOL and HIV cure research ethics literature, combined with deliberation from various stakeholders and our experience with the Last Gift study to date, we outline considerations to ensure that such research with terminally ill PLWHIV remains ethical, focusing on five topics: 1) protecting autonomy through informed consent, 2) avoiding exploitation and fostering altruism, 3) maintaining a favorable benefits/risks balance, 4) safeguarding against vulnerability through patient-participant centeredness, and 5) ensuring the acceptance of next-of-kin/loved ones and community stakeholders. EOL HIV cure-related research can be performed ethically and effectively by anticipating key issues that may arise. While not unique to the fields of EOL or HIV cure-related research, the considerations highlighted can help us support a new research approach. We must honor the lives of PLWHIV whose involvement in research can provide the knowledge needed to achieve the dream of making HIV infection curable. (shrink)

This study described parent participation in the informed consent conference for randomized clinical trials (RCTs) in childhood leukemia and documented the relationship of physician communication to parent participation. Parents of 140 children with newly diagnosed leukemia who were eligible for RCTs were studied at six sites using comprehensive methods involving direct observation and transcripts of parent-physician communication based on audiotapes. Parent participation during the informed consent conference reflected a wide range of content categories. Consistent with hypotheses, Physician Rapport and Partnership (...) Building related to parent participation in the informed consent conference but Information Giving did not. Higher parent socioeconomic status also was related to greater parent participation for two of three measures of parent participation. Findings suggest that physician behaviors that provide support and facilitate communication may enhance parental participation in the informed consent conference for RCTs in childhood leukemia. (shrink)

A plethora of ethical issues in livestock agriculture has emerged to public attention in recent decades, of which environmental and animal welfare concerns are but two, albeit prominent, themes. For livestock agriculture to be considered sustainable, somehow these interconnected themes need to be addressed. Ethical debate on these issues has been extensive, but mostly started from and focused on single issues. The views of farmers in these debates have been largely absent, or merely figured as interests, instead of being considered (...) morally worthwhile themselves. In this paper the relevance for ethical debates of the ways farmers discuss and engage with moral concerns is explored. The variety of norms that figure in contemporary farming practices is sketched in its multifarious complexity, illustrated by ethnographic fieldwork, and systematized in terms of “orders of worth.” Reviewing the practical arguments and commitments of farmers within this framework reveals that farming practices are subject to mixed motives, in which an amalgam of types of concerns play a role. Recognition of the peculiarly entangled nature of the ethics of farming practices could counter the tendency in policy making, technological innovation, and ethical thought to compartmentalize our moral landscape. Understanding farming practice as the integration of a mosaic of concerns in the light of a variety of moral experiences would foster public appreciation of positions of farmers in debates on improving the sustainability and societal acceptability of livestock agriculture. (shrink)

BackgroundHuman embryonic stem cells are currently used for developing treatment against Parkinson’s disease (PD). However, the use of ES cells is surrounded with moral concerns. Research regarding the public's attitudes can form an important basis for policymaking. The aim was to explore the perceptions of the public on using donated human embryos for developing treatment of Parkinson’s Disease.MethodsSemi-structured individual qualitative interviews were conducted with 11 members of the general population in Sweden. Interviews were analyzed with thematic content analyses.ResultsFour categories and (...) additional sub-categories; Different views on the embryo requires delicacy, Using embryos to treat Parkinson’s disease, Doing things in the right way, and Communication, media, and public opinion. In general, respondents were positive towards the usage of embryotic stem cells to treat PD, but the usage were conditioned and specific terms were demanded. Informed consent from both donors were required and delicacy and sensitivity when working with embryos were needed.ConclusionsIt was perceived better to use surplus embryos to treat PD increase is than to discard them, also among those who perceived the embryo as “a potential life.” The participants raised several conditions under usage for treatment should be allowed. Even if the embryos otherwise are going to be discarded, usage requires informed consent from the donating couples. (shrink)

Background Making the right decisions, while simultaneously showing respect for patient autonomy, represents a great challenge to nursing home staff in the issues of life-prolonging treatment, hydration, nutrition and hospitalisation to dying patents in end-of-life. Objectives To study how physicians and nurses protect nursing home patients' autonomy in end-of-life decisions, and how they justify their practice. Design A qualitative descriptive design with analysis of the content of transcribed in-depth interviews with physicians and nurses. Participants Nine physicians and ten nurses in (...) 10 nursing homes in Norway. Results and interpretations Assessment of the patient's competence to consent to treatment is almost absent. The physicians build their practice on the principles of beneficence and nonmaleficence. Nurses tend to trust the patients' rejection of life support, even when the patients have difficulty speaking or suffer from dementia. Relatives were, according to the health personnel, included in decision-making processes to a very limited extent. However, futile life support is sometimes provided contrary to the physicians' judgement of what constitutes the patient's best interest on occasions when they are pressurised by next of kin. Conclusions The study reveals a need to improve decision-making routines according to ethical ideals and legislation. Conflicts between relatives and healthcare professionals in the decision-making process deflect the focus from searching for the best possible treatment for the terminal patient. Further discussion is required as to whether the concept of autonomy is applicable in situations in which the patient is impaired and dying. (shrink)

Thema dieses Essays sind Fragen nach dem Verhältnis theoriegeleiteter empirischer Forschung und systematischer Analyse, Rekonstruktion und Bewertung von in pädagogischen Konstellationen unweigerlich auftretenden ethischen Fragestellungen und Problemen. Ziel des Beitrags ist es, am Beispiel von aktuellen bildungstheoretischen Debatten über den normativen Gehalt des Bildungsbegriffs Möglichkeiten des Umgangs mit einigen der zentralen methodologischen Herausforderungen einer sozialwissenschaftlich informierten und anwendungsorientierten Ethik zu skizzieren. Dabei wird nicht beansprucht, die entsprechenden Fragen abschließend zu klären, sondern es werden am Beispiel von Problemvorgaben einer Ethik der (...) Bildung Wege und Perspektiven der Argumentation und Analyse sondiert, die bis dato insbesondere in der deutschsprachigen Erziehungs- und Bildungsphilosophie eher unterrepräsentiert sind. Zu diesem Zweck werde ich zunächst grundsätzliche Fragen zur Ein- und Abgrenzung der Zuständigkeit, des Anwendungsbereichs und der Aufgaben Pädagogischer Ethik diskutieren, um sodann in kritischer Absicht aktuelle Probleme mit ethischen Positionierungen im Rahmen erziehungsund bildungswissenschaftlicher Forschung darzulegen. Darauf aufbauend werde ich am Beispiel der Kontroverse über die normativen Grundlagen von Kollers transformatorischer Bildungstheorie methodologische Probleme einer Ethik der Bildung analysieren, die sich auf das Verhältnis von theoretischer Konzeptualisierung und der empirischen Rekonstruktion von Einzelfällen und ihrer ethischen Bewertung beziehen. Abschließend werde ich aus einer allgemeineren Perspektive Möglichkeiten, Probleme und Herausforderungen einer empirisch informierten Pädagogischen Ethik vorstellen. (shrink)

This paper is concerned with the practical importance of different forms of paternalism for educational theory and practice. Contrary to the traditional treatment of paternalism as a sometimes necessary and rather messy aspect of educational practices, I demonstrate that paternalism is to be regarded as an “indigenous concept” of educational theory and as the ‘indigenous model of justification’ that underlies the structure of educational practices. Based on an analysis of the intricate nexus between autonomy-oriented forms of paternalism and educational forms (...) of autonomy-based perfectionism I furthermore argue that a perfectionistically structured conception of autonomy provides a more adequate evaluative framework for justifying autonomy as an educational aim than alternative educational regimes of autonomy can deliver. Finally, I discuss some major theoretical problems of bridging the gap between general ethical principles and their application in practical fields. (shrink)

In this article, we seek to contribute to the debate on the requirement of disclosure in the context of informed consent for research. We defend the subjective standard of disclosure and describe ways to implement this standard in research practice. We claim that the researcher should make an effort to find out what kinds of information are likely to be relevant for those consenting to research. This invites researchers to take empirical survey information seriously, attempt to understand the cultural context, (...) talk to patients to be better able to understand what can be potentially different concerns and interests prevalent in the target population. The subjective standard of disclosure should be seen as a moral ideal that perhaps can never be perfectly implemented but still can and should be used as a normative ideal guiding research practice. In the light of these discussions, we call for more empirical research on what considerations are likely to be perceived as relevant by potential research participants recruited from different socio-economic and cultural groups. (shrink)

Taking organisational responses to the ?organ retention scandals? in the United Kingdom and Australia as a starting point, this paper considers the role of social welfare workers within the medico-legal system. Official responses to the inquiries of the late 1990s have focused on issues of consent and process-transparency, leaving unaddressed concerns expressed by the bereaved about the impact of organ retention on both their experience of grief and on the deceased themselves. A review of grief and embodiment literature suggests that (...) such concerns are consistent with the significance of relationship, attachment and identity within grief resolution?however that last problematic term is defined. The case example of an Australian coronial jurisdiction which has attempted to deal with some of these issues through mandating the discussion of autopsy and organ retention processes by grief counsellors with bereaved families is then provided. A distinction is drawn between these discussions and the seeking of consent. The discussion concludes by considering the ambiguous nature of the social welfare role within this contested field, suggesting that this ambiguity, while perhaps a source of flexibility in practice, may itself relate to a lack of clear information about the needs of the bereaved. This paper contributes to the development of that knowledge and offers some necessarily tentative recommendations regarding social welfare practice in this challenging arena. (shrink)

Kant formulated a secular argument against suicide’s permissibility based on what he regarded as the intrinsic value of humanity. In this paper, I first show that Kant’s moral framework entails that some types of suicide are morally permissible. Just as some homicides are morally permissible, according to Kant, so are suicides that are performed according to equivalent maxims. Intention, foreseeability, voluntariness, diminished responsibility, and mental capacity determine the moral characterization of the killing. I argue that a suicide taxonomy that differentiates (...) types of suicide according to morally relevant criteria is compatible with Kantian ethics; it establishes that even where we hold a robust deontological sanctity of life position, we are not obligated to preserve the lives of people whose future life only offers profound suffering, and helping them to die may be justifiable if doing so honors their dignity and autonomy. Nevertheless, homicide and suicide are only weakly morally symmetrical in that even if a given suicide is morally impermissible, we do not normally have the right to prevent it forcibly, though this may be altered by juridical laws under some circumstances. (shrink)

Although there is consensus on the fact that ionizing radiation used in radiological examinations can affect health, the stochastic nature of risk makes it difficult to anticipate and assess specific health implications for patients. The issue of radiation protection is peculiar as any dosage received in life is cumulative, the sensitivity to radiation is highly variable from one person to another, and between 20 % and 50 % of radiological examinations appear not to be necessary. In this context, one might (...) reasonably assume that information and patient consent would play an important role in regulating radiological practice. However, there is to date no clear consensus regarding the nature and content of—or even need for—consent by patients exposed to ionizing radiation. While law and ethics support the same principles for respecting the dignity of the person, in the context of radiology practice, they do not provide a consistent message to guide clinical decision-making. This article analyzes the issue of healthcare professionals’ duty to inform and obtain patient consent for radiological examinations. Considering that both law and ethics have as one of their aims to protect vulnerable populations, it is important that they begin to give greater attention to issues raised by the use of ionizing radiation in medicine. While the situation in Canada serves as a backdrop for a reflective analysis of the problem, the conclusions are pertinent for professional practice in other jurisdictions because the principles underlying health law and jurisprudence are fairly general. (shrink)

Philosophy of science was once a much more socially engaged endeavor, and can be so again. After a look back at philosophy of science in the 1930s-1950s, I turn to discuss the current potential for returning to a more engaged philosophy of science. Although philosophers of science have much to offer scientists and the public, I am skeptical that much can be gained by philosophers importing off-the-shelf discussions from philosophy of science to science and society. Such efforts will likely look (...) like efforts to do applied ethics by merely applying ethical theories to particular contexts and problems. While some insight can be gained by these kinds of endeavors, the most interesting and pressing problems for the actual practitioners and users of science are rarely addressed. Instead, I recommend that philosophers of science engage seriously and regularly with scientists and/or the users of science in order to gain an understanding of the conceptual issues on the ground. From such engagement, flaws in the traditional philosophical frameworks, and how such flaws can be remedied, become apparent. Serious engagement with the contexts of science thus provides the most fruit for philosophy of science per se and for the practitioners whom the philosophers aim to assist. And if one focuses on contexts where science has its most social relevance, these efforts can help to provide the thing that philosophy of science now lacks: a full-bodied philosophy of science in society. (shrink)

In professional settings, people often have diverse and competing conceptions of responsibility and of when it is fair to hold someone responsible. This may lead to undesirable gaps in the distribution of responsibilities. In this paper, a procedural model is developed for alleviating the tension between diverging responsibility conceptions. The model is based on the Rawlsian approach of wide reflective equilibrium and overlapping consensus. The model is applied to a technological project, which concerned the development of an in-house monitoring system (...) based on ambient technology. The development of this innovative technology raised questions among the technological researchers about its social acceptance and the way issues related to privacy and security should be addressed. The case is analyzed in terms of two procedural norms (reflective learning and inclusiveness), which are based on literature on policy and innovation networks. Analysis of the case shows that, in a pluralist setting, a procedural approach can be useful for encouraging discussion on the legitimacy of different responsibility conceptions and the question what a fair responsibility distribution amounts to. (shrink)

Although the need to theorize ethics within the complexities of nursing practice has been identified within the nursing literature, to date the link between ethics epistemology and specific nursing actions has received limited attention. In particular, little exploration has been carried out to examine how nurses ‘know’ what is ethical and the knowledge they draw upon to inform their nursing actions within the complexities of their everyday practice. This study describes a participatory inquiry project that focused on developing and articulating (...) an epistemology of ethics while in the midst of everyday nursing work. Epistemological and methodological insights are discussed in light of the challenges nurses face in contemporary healthcare contexts. (shrink)

The concept of autonomy plays a central role in bioethics,1 but there is no consensus as to how we should understand it beyond a general notion of self-determination. The conception of autonomy deployed in applied ethics2 can have crucial ramifications when it is applied in real-world scenarios, so it is important to be clear. However, this clarity is often lacking when autonomy is discussed in the bioethics literature. In this paper we outline three different conceptions of autonomy, and argue that (...) a substantive, perfectionist approach meets the theoretical requirements for an account of autonomy and also provides practical guidance. As Rebecca Walker argues, bioethics requires a more conceptually adequate account... (shrink)

The “right not to know” has generated significant discussion, especially regarding genetic information. In this paper, I argue that this purported right is better understood as a preference and that treating it as a substantive right has led to confusion. To support this claim, I present three critiques of the way the right not to know has been characterized. First, I demonstrate that the many conceptualizations of this right have hampered debate. Second, I show that the way autonomy is conceptualized (...) in this literature is also problematic. Third, I examine the notion of a right in more detail, to support my third critique: that the right to know and the right not to know genetic information are often erroneously treated as having equivalent status. On my understanding, the claim being made is better thought of as a preference, not a right, and a preference not to know certain information becomes only one of several considerations relevant to medical decision making. (shrink)

Med udgangspunkt i en case fra socialt arbejde præsenterer artiklen en "etisk læsning" af professioner og professionsudøvelse. Det gøres gældende, at visse fag og ydelser, først og fremmest de klassiske hjælpeprofessioner, er etiske i deres kerne ved at have som formål at værne om og fremme etiske grundværdier. Hvad der kvalificerer som etiske grundværdier søges belyst ud fra en aristotelisk etikforståelse. På baggrund heraf gøres der rede for, hvorfor de "tre au'er": autorisation, autonomi og autenticitet ifølge den etiske læsning er (...) fundamentale forudsætninger for etisk forsvarlig professionsudøvelse, og hvordan disse forudsætninger kommer under pres fra en form for målrationel organisationstænkning kendt som New Public Management. Om den aktuelle "etikbølge" inden for hjælpeprofessionerne er en del af problemet eller en del af løsningen, afhænger i høj grad af, hvilke begreber om profession og etik der ligger bag.Nøgleord: professionsetik, etiske grundværdier, autonomi, autenticitetEnglish summary: The Ethical Core of ProfessionsTaking a Danish case from social work as its point of departure, the article presents an “ethical reading” of professions and professional work: certain occupations and services, especially the classical helping professions, are essentially ethical by having their point and purpose in protecting and promoting core ethical values. An Aristotelian conception of ethics is offered as a qualification of what is meant by core ethical values. On this background an account is given of the reasons why the "three au's": authorization, autonomy, and authenticity are necessary conditions for ethically sound professional work and how these conditions are put under pressure by a certain end-rational organizational ideology known as New Public Management. Whether the current ethics wave in the helping professions is considered part of the problem or part of the solution depends to a large extent on which concepts of profession and ethics are invoked. (shrink)

The introduction of new energy technologies may lead to public resistance and contestation. It is often argued that this phenomenon is caused by an inadequate inclusion of relevant public values in the design of technology. In this paper we examine the applicability of the value sensitive design approach. While VSD was primarily introduced for incorporating values in technological design, our focus in this paper is expanded towards the design of the institutions surrounding these technologies, as well as the design of (...) stakeholder participation. One important methodological challenge of VSD is to identify the relevant values related to new technological developments. In this paper, we argue that the public debate can form a rich source from which to retrieve the values at stake. To demonstrate this, we have examined the arguments used in the public debate regarding the exploration and exploitation of shale gas in the Netherlands. We identified two important sets of the underlying values, namely substantive and procedural values. This paper concludes with two key findings. Firstly, contrary to what is often suggested in the literature, both proponents and opponents seem to endorse the same values. Secondly, contestation seems to arise in the precise operationalization of these values among the different stakeholders. In other words, contestation in the Dutch shale gas debate does not arise from inter-value conflict but rather from intra-value conflicts. This multi-interpretability should be incorporated in VSD processes. (shrink)

Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent''s refusal to provide consent for a child''s medical care. In this paper, I will argue that the (...) best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent''s decision to refuse medical care on behalf of a child. (shrink)

Assessing the risk-benefit ratio has always been considered key in designing clinical trials. These benefits can be diverse and may include social value and psychological benefits. When it comes to...

Für die Argumentation von Moralphilosophen, die die Legalisierung der aktiven Sterbehilfe befürworten, spielt das Autonomieprinzip eine wichtige Rolle. Ihrer Auffassung nach verlangt der Respekt vor der Autonomie, die Entscheidung eines schwer kranken Menschen gegen die Fortsetzung des Lebens vorbehaltlos anzuerkennen. Dagegen haben verschiedene Theoretiker auf Gefahren hingewiesen, die die rechtliche Zulassung der Tötung auf Verlangen für die individuelle Autonomie mit sich bringt. Sobald der Kranke über die Möglichkeit der aktiven Sterbehilfe verfüge, falle ihm die Verantwortung für die Inanspruchnahme von Pflegeleistungen (...) zu. In der Folge könne u. a. von Seiten der Familie die Forderung an ihn gestellt werden, den vom Gesetzgeber eröffneten Ausweg zu nutzen und sie von der Last seiner Pflege zu befreien. Die Bedenken erscheinen insofern berechtigt, als Formen sozialen Zwangs vorstellbar sind, die eine freie Entscheidung des Patienten verhindern. Allerdings vermag weder das Verbot noch die Zulassung der aktiven Sterbehilfe eine autonome Entscheidung aller Individuen zu gewährleisten. Die Abwägung der Risiken, mit denen beide Optionen behaftet sind, spricht im Ergebnis für die Legalisierung der Tötung auf Verlangen. (shrink)

Autonomy, an individual's right to make personal decisions regarding his/her own health, represents one of the major ethical principles of medicine. While there are many examples citing the benefits this right provides for the individual, the impact that personal healthcare decisions have on others is often neglected. Here, evidence from end-stage renal disease is reviewed to hypothesise the creation of a universal kidney donation programme that although provides unparalleled benefits to its citizens, relies on the participation of a large proportion (...) of the society. Given that this essay also addresses the public's major concerns regarding kidney donation, one of the only remaining implementation barriers is the individuals' right not to participate. Therefore, irrespective of the humane and complex emotionally laden reasons for not enrolling in such programmes, this essay provides some estimates of the significant resource and quality of life costs associated with autonomy. Assuming humans are competent to make informed personal healthcare choices, similar to recent efforts to increase awareness about the negative impact of certain lifestyle choices on global warming, citizens should also be better informed about the medical costs their autonomy has on society. (shrink)

This paper looks at the issue of consent from children and whether the test of Gillick competency, applied in medical and healthcare practice, ought to extend to participation in research. It is argued that the relatively broad usage of the test of Gillick competency in the medical context should not be considered applicable for use in research. The question of who would and could determine Gillick competency in research raises further concerns relating to the training of the researcher to make (...) such a decision as well as to the obvious issue of the researcher’s personal interest in the project and possibility of benefiting from the outcome. These could affect the judgment of Gillick competency if the researcher is charged with making this decision. The above notwithstanding, there are two exceptional research situations in which Gillick competency might be legitimately applied: when the research is likely to generate significant advantages for the participants while exposing them to relatively minor risks, and when it is likely to generate great societal benefit, pose minimal risks for the participants and yet raise parental objection. In both cases, to ensure that autonomy is genuinely respected and to protect against personal interest, Gillick competency should be assessed by an individual who has no interest or involvement in the research. (shrink)

Bioethicists sometimes defend compromise positions, particularly when they enter debates on applied topics that have traditionally been highly polarised, such as those regarding abortion, euthanasia and embryonic stem cell research. However, defending compromise positions is often regarded with a degree of disdain. Many are intuitively attracted to the view that it is almost always problematic to defend compromise positions, in the sense that we have a significant moral reason not to do so. In this paper, we consider whether this common (...) sense view can be given a principled basis. We first show how existing explanations for the problematic nature of compromise fall short of vindicating the common sense view, before offering our own explanation, which, we claim, comes closer to vindicating that view. We argue that defending a compromise will typically have two epistemic costs: it will corrupt attempts to use the claims of ethicists as testimonial evidence, and it will undermine standards that are important to making epistemic progress in ethics. We end by suggesting that the epistemic costs of compromise could be reduced by introducing a stronger separation between ethical debate aimed at fulfilling the epistemic role of ethics, and ethical debate that aims to directly produce good policy or practice. (shrink)

Background In the ethical and clinical literature, cases of parents who want treatment for their child to be withdrawn against the views of the medical team have not received much attention. Yet resolution of such conflicts demands much effort of both the medical team and parents. Objective To discuss who can best protect a child9s interests, which often becomes a central issue, putting considerable pressure on mutual trust and partnership. Methods We describe the case of a 3-year-old boy with acquired (...) brain damage due to autoimmune-mediated encephalitis whose parents wanted to stop treatment. By comparing this case with relevant literature, we systematically explored the pros and cons of sharing end-of-life decisions with parents in cases where treatment is considered futile by parents and not (yet) by physicians. Conclusions Sharing end-of-life decisions with parents is a more important duty for physicians than protecting parents from guilt or doubt. Moreover, a request from parents on behalf of their child to discontinue treatment is, and should be, hard to over-rule in cases with significant prognostic uncertainty and/or in cases with divergent opinions within the medical team. (shrink)

Labeling of food consumption is related to food safety, food quality, environmental, safety, and social concerns. Future politics of food will be based on a redefinition of commodity food consumption as an expression of citizenship. “Citizen-consumers” realize that they could use their buying power in order to develop a new terrain of social agency and political action. It takes for granted kinds of moral selfhood in which human responsibility is bound into human agency based on knowledge and recognition. This requires (...) new kinds of food labeling practices. Existing research on consumer’s preferences often fails to recognize the full complexity of the motivations and intentions through which the identity of the moral self is built up in relation to food consumption practices. For citizens, not only food production practices matter but also the impact of what we eat on who we are and the ecological foot print of our food stuff. Two major drivers for this are the idea that we ourselves have to take care of our own bodies (“We are what we eat”) and that we are responsible for Planet Earth. Since both obesity and climate change have become major public concerns, also governments develop an increasing interest in defining how citizens ought to behave as consumers and how retailers and producers should facilitate such responsible behavior. Since they are supposed to defend the “bonum commune,” e.g., the public health of their citizens and a sound common future for all, a new consensus on “appropriate” consumption choices has to be found, balancing beneficence and autonomy. (shrink)