Relational autonomy theorists attempt to accommodate social embeddedness within a conception of autonomy. These attempts are conceptually messy, at best, and category errors, at worst. Rejecting the liberal conception of autonomy due to feminist concerns is more helpfully answered by the neorepublican notion of freedom as nondomination. The conception of freedom as nondomination captures the values that motivate the relational turn in moral and political theory and does so in a conceptually neater way than attempting to accommodate those concerns in (...) our accounts of autonomy. (shrink)

ZusammenfassungDie bei Krebserkrankungen junger Frauen erforderliche Chemo- bzw. Strahlentherapie kann in der Folge bei den betroffenen Patientinnen zur Unfruchtbarkeit führen. Somit werden die Betroffenen oft gleichzeitig mit einer potentiell lebensbedrohlichen Erkrankung und einem potentiell kinderlosen Leben konfrontiert. Die derzeitigen Methoden zum Erhalt der Fertilität sind experimentell, mit therapeutischer Unsicherheit und gesundheitlichen Risiken belastet, dennoch werden sie zunehmend nachgefragt. Die mit dem Angebot fertilitätserhaltender Maßnahmen verbundene derzeitige Beratungspraxis wird in dem hier vorliegenden Beitrag aus ethischer Perspektive hinterfragt. Ausgehend von einer kritischen (...) Würdigung des nach wie vor häufig angewandten Autonomiekonzepts von Beauchamp und Childress wird diskutiert, auf welche Weise die normative Belastbarkeit der Entscheidungsfindung durch die Vulnerabilität der Patientin limitiert sein kann. Als Alternative zum Autonomiekonzept von Beauchamp und Childress wird anschließend eine Entscheidungsfindung auf der Grundlage biographischer Identität in Anlehnung an das Konzept der personalen Autonomie nach Quante erörtert. (shrink)

Self‐management is often presented as a panacea for chronic disease care. It plays an important role at the policy level and increasingly guides the delivery of health care services. Self‐management approaches to care are founded on traditional individualistic views of autonomy in which the patient is understood as being independent, rational, self‐interested, and self‐governing. This conceptualization of autonomy has been challenged, particularly by feminist scholars. In this paper I review predominant critiques of self‐management and the traditional individualistic view of autonomy. (...) I propose that a relational approach to autonomy, which is premised on social embeddedness and attends to social, political, and material conditions, is a more sound conception of autonomy capable of taking into consideration the complexities of illness experiences. I suggest that integrating a relational perspective of autonomy into self‐management will be valuable in guiding its progression and elaborate ways in which self‐management research and practice could benefit from incorporating a relational approach to autonomy. (shrink)

BackgroundFamily presence during adult cardiopulmonary resuscitation is still not widely implemented. Based on empirical evidence, various national and international professional organizations recommend allowing relatives to be present during resuscitation. However, healthcare providers worldwide are still reluctant to make it standard care.PurposeThis paper is a part of an ongoing cross-cultural study that aims to solicit attitudes of healthcare providers working in emergency departments towards family presence during cardiopulmonary resuscitation. This paper reports the qualitative data from surveying healthcare providers working in an (...) emergency department at a university-affiliated hospital in Singapore.MethodHealthcare workers were asked to fill out an online survey, including both quantitative and qualitative questions. Their attitudes were critically analyzed and compared with existing empirical data.ResultsMajority of healthcare workers believed that relatives should not be present during c... (shrink)

The nature and role of the patient in biomedicine comprise issues central to bioethical inquiry. Given its developmental history grounded firmly in a backlash against 20th-century cases of egregious human subjects abuse, contemporary medical bioethics has come to rely on a fundamental assumption: the unit of care is the autonomous self-directing patient. In this article we examine first the structure of the feminist social critique of autonomy. Then we show that a parallel argument can be made against relational autonomy as (...) well, demonstrating how this second concept of autonomy fails to take sufficiently into account an array of biological determinants, particularly those from microbial biology. Finally, in light of this biological critique, we question whether or to what extent any relevant and meaningful view of autonomy can be recovered in the contemporary landscape of bioethics. (shrink)

This paper analysed the nature of autonomy, in particular respect for autonomy in medical ethics/bioethics in Japan. We have undertaken a literature survey in Japanese and English and begin with the historical background and explanation of the Japanese wordJiritsu (autonomy). We go on to identify patterns of meaning that researchers use in medical ethics / bioethics discussions in Japan, namely, Beauchamp and Childress’s individual autonomy, relational autonomy, and O’Neill’s principled autonomy as the three major ways that autonomy is understood. We (...) examine papers discussing these interpretations. We propose using the term ‘a form of autonomy’ first used by Edmund Pellegrino in 1992 and examine the nature of ‘a form of autonomy.’ We finally conclude that the crux of what Pellegrino calls ‘something close to autonomy,’ or ‘a form of autonomy' might best be understood as the minimization of physician paternalism and the maximization of respect for patient preference. Simultaneously, we introduce a family-facilitated approach to informed consent and respond to criticism by Laura Sullivan. Finally, we discuss cross-cultural approaches and global bioethics. Furthermore, we use the term ‘Bioethics across the Globe’ instead of ‘Global Bioethics’, calling for international scholars to write works to provide an in-depth understanding of each country. We conclude that deep understanding of others is pivotal for dialogue to be of value. We hope this article will deepen the reader’s understanding of Japan and will contribute to the progress of bioethics worldwide. (shrink)

This essay explores three issues in respect for autonomy that pose unfinished business for the concept. By this, I mean that the dialogue over them is ongoing and essentially unresolved. These are: whether we ought to respect persons or their autonomous choices; the role of relational autonomy; and whether nonhuman animals can be autonomous. In attending to this particular set of unfinished business, I highlight some critical moral work left aside by the concept of respect for autonomy as understood in (...) Beauchamp and Childress’ Principles of Biomedical Ethics. Specifically, while significant pragmatic traction is gained by the authors’ focus on autonomous choice, carving such a focus out from the broader questions of moral respect and the autonomy of the person leaves aside a number of questions that we might have thought a view about respect for autonomy in biomedicine ought to answer. These include: How should physicians respond when autonomous patients make decisions that appear nonautonomous? What is the impact of the view that autonomy is “relational” for cross-cultural differences in how autonomy is respected? If chimpanzees can be autonomous, what does that mean for how they should be treated? (shrink)

Respect for autonomy is a key principle in bioethics. However, respecting autonomy in practice is complex because most people define themselves and make decisions influenced by a complex network of social relationships. The extent to which individual autonomy operates for each partner within the context of decision-making within marital or similar relationships is largely unexplored. This paper explores issues related to decision-making by couples for health care and the circumstances under which such a practice should be respected as compatible with (...) autonomous decision-making. We discuss the concept of autonomy as it applies to persons and to actions, human interdependency and gender roles in decision-making, the dynamics and outcomes of couples’ joint decision-making, and the ethics of couples’ joint decision-making. We believe that the extent to which couples’ joint decision-making might be deemed ethically acceptable will vary depending on the context. Given that in many traditional marriages the woman is the less dominant partner, we consider a spectrum of scenarios of couples’ joint decision-making about a woman’s own health care that move from those that are acceptably autonomous to those that are not consistent with respecting the woman’s autonomous decision-making. To the extent that there is evidence that both members of a couple understand a decision, intend it, and that neither completely controls the other, couples’ joint decision-making should be viewed as consistent with the principle of respect for the woman’s autonomy. At the other end of the spectrum are decisions made by the man without the woman’s input, representing domination of one partner by the other. We recommend viewing the dynamics of couples’ joint decision-making as existing on a continuum of degrees of autonomy. This continuum-based perspective implies that couples’ joint decision-making should not be taken at face value but should be assessed against the specific cultural, ethnic, and religious backgrounds and personal circumstances of the individuals in question. (shrink)

In 2011, Frank Van Den Bleeken became the first detainee to request euthanasia under Belgium’s Euthanasia Act of 2002. This article investigates whether it would be lawful and morally permissible for a doctor to accede to this request. Though Van Den Bleeken has not been held accountable for the crimes he committed, he has been detained in an ordinary prison, without appropriate psychiatric care, for more than 30 years. It is first established that VDB’s euthanasia request plausibly meets the relevant (...) conditions of the Euthanasia Act and that, consequently, a doctor could lawfully fulfill it. Next, it is argued that autonomy-based reasons for euthanizing VDB outweigh complicity-based reasons against doing so, and that, therefore, it is also morally permissible for a doctor to carry out the euthanasia request. (shrink)

Contemporary clinical ethics was founded on principlism, and the four principles: respect for autonomy, nonmaleficence, beneficence and justice, remain dominant in medical ethics discourse and practice. These principles are held to be expansive enough to provide the basis for the ethical practice of medicine across cultures. Although principlism remains subject to critique and revision, the four-principle model continues to be taught and applied across the world. As the practice of medicine globalizes, it remains critical to examine the extent to which (...) both the four-principle framework, and individual principles among the four, suffice patients and practitioners in different social and cultural contexts. Using the four-principle model we analyze two accounts of surrogate decision making – one from the developed and one from the developing world – in which the clinician undertakes medical decision-making with apparently little input from the patient and/or family. The purpose of this analysis is to highlight challenges in assessing ethical behaviour according to the principlist model. We next describe cultural expectations and mores that inform both patient and clinician behaviors in these scenarios in order to argue that the principle of respect for persons informed by culture-specific ideas of personhood may offer an improved ethical construct for analyzing and guiding medical practice in a globalized and plural world. (shrink)

Die bei Krebserkrankungen junger Frauen erforderliche Chemo- bzw. Strahlentherapie kann in der Folge bei den betroffenen Patientinnen zur Unfruchtbarkeit führen. Somit werden die Betroffenen oft gleichzeitig mit einer potentiell lebensbedrohlichen Erkrankung und einem potentiell kinderlosen Leben konfrontiert. Die derzeitigen Methoden zum Erhalt der Fertilität sind experimentell, mit therapeutischer Unsicherheit und gesundheitlichen Risiken belastet, dennoch werden sie zunehmend nachgefragt. Die mit dem Angebot fertilitätserhaltender Maßnahmen verbundene derzeitige Beratungspraxis wird in dem hier vorliegenden Beitrag aus ethischer Perspektive hinterfragt. Ausgehend von einer kritischen (...) Würdigung des nach wie vor häufig angewandten Autonomiekonzepts von Beauchamp und Childress wird diskutiert, auf welche Weise die normative Belastbarkeit der Entscheidungsfindung durch die Vulnerabilität der Patientin limitiert sein kann. Als Alternative zum Autonomiekonzept von Beauchamp und Childress wird anschließend eine Entscheidungsfindung auf der Grundlage biographischer Identität in Anlehnung an das Konzept der personalen Autonomie nach Quante erörtert. (shrink)

Background Ethics committees typically apply the common principles of autonomy, nonmaleficence, beneficence and justice to research proposals but with variable weighting and interpretation. This paper reports a comparison of ethical requirements in an international cross-cultural study and discusses their implications. Discussion The study was run concurrently in New Zealand, UK, Israel, Canada and USA and involved testing hypotheses about believability of testimonies regarding alleged child sexual abuse. Ethics committee requirements to conduct this study ranged from nil in Israel to considerable (...) amendments designed to minimise participant harm in New Zealand. Assessment of minimal risk is a complex and unreliable estimation further compounded by insufficient information on probabilities of particular individuals suffering harm. Estimating potential benefits/ risks ratio and protecting participants' autonomy similarly are not straightforward exercises. Summary Safeguarding moral/humane principles should be balanced with promotion of ethical research which does not impede research posing minimal risk to participants. In ensuring that ethical standards are met and research has scientific merit, ethics committees have obligations to participants (to meet their rights and protect them from harm); to society (to ensure good quality research is conducted); and to researchers (to treat their proposals with just consideration and respect). To facilitate meeting all these obligations, the preferable focus should be promotion of ethical research, rather than the prevention of unethical research, which inevitably results in the impediment of researchers from doing their work. How the ethical principles should be applied and balanced requires further consideration. (shrink)

A growing proportion of clinical research funded by pharmaceutical companies, high-income country research agencies, and not-for-profit funders is conducted in low- and middle-income settings. Disparities in wealth and access to healthcare between the populations where new interventions are often tested and those where many of them are ultimately marketed raise concerns about exploitation. This chapter examines several ethical requirements frequently advanced as mechanisms for protecting research subjects in underserved communities from exploitation and evaluates the effectiveness of those mechanisms as responses (...) to exploitation worries. It goes on to highlight where the conceptual frameworks relied upon by research ethicists must be improved if we are to fully understand the nature of the moral claims and obligations that arise in research conducted in underserved communities. (shrink)

Anthropologists and sociologists offer numerous critiques of bioethics. Social scientists criticize bioethicists for their arm-chair philosophizing and socially ungrounded pontificating, offering philosophical abstractions in response to particular instances of suffering, making all-encompassing universalistic claims that fail to acknowledge cultural differences, fostering individualism and neglecting the importance of families and communities, and insinuating themselves within the “belly” of biomedicine. Although numerous aspects of bioethics warrant critique and reform, all too frequently social scientists offer ungrounded, exaggerated criticisms of bioethics. Anthropological and sociological (...) critiques of bioethics are hampered by the tendency to equate bioethics with clinical ethics and moral theory in bioethics with principlist bioethics. Also, social scientists neglect the role of bioethicists in addressing organizational ethics and other “macro-social” concerns. If anthropologists and sociologists want to provide informed critiques of bioethics they need to draw upon research methods from their own fields and develop richer, more informed analyses of what bioethicists say and do in particular social settings. (shrink)

The principle of respect for autonomy often dominates the bioethical discourse. Yet despite its prominence, the exact contours are not always well defined. Widespread disagreement about the nature of autonomy has led some to conclude that autonomy is hopelessly vague and therefore ought to be abandoned in contemporary bioethics. Despite calls to move beyond it, autonomy remains at the center of bioethical reflection. The challenge, then, if autonomy is to function as a bedrock of contemporary bioethics, is to define more (...) clearly the shape of autonomy, to mark more precisely its conceptual boundaries, and to delineate more carefully how best autonomy is put into practice in medical ethics. In this article, I raise questions about the ways autonomy is used in theory, as well as the ways that it is operationalized in practice. (shrink)

Recent research on patient decision-making reveals a disconnect between theories of autonomy, agency, and decision-making and their practice in contemporary clinical encounters. This study examines these concepts in the context of female patients making oncofertility decisions in the United Kingdom in light of the phenomenon of “being guided.” Patients experience being guided as a way to cope with, understand, and defer difficult treatment decisions. Previous discussions condemn guided decision-making, but this research suggests that patients make an informed, autonomous decision to (...) be guided by doctors. Thus, bioethicists must consider the multifaceted ways that patients enact their autonomy in medical encounters. (shrink)

Background Respect for autonomy is a key principle in bioethics. However, respecting autonomy in practice is complex because most people define themselves and make decisions influenced by a complex network of social relationships. The extent to which individual autonomy operates for each partner within the context of decision-making within marital or similar relationships is largely unexplored. This paper explores issues related to decision-making by couples for health care and the circumstances under which such a practice should be respected as compatible (...) with autonomous decision-making. Discussion We discuss the concept of autonomy as it applies to persons and to actions, human interdependency and gender roles in decision-making, the dynamics and outcomes of couples’ joint decision-making, and the ethics of couples’ joint decision-making. We believe that the extent to which couples’ joint decision-making might be deemed ethically acceptable will vary depending on the context. Given that in many traditional marriages the woman is the less dominant partner, we consider a spectrum of scenarios of couples’ joint decision-making about a woman’s own health care that move from those that are acceptably autonomous to those that are not consistent with respecting the woman’s autonomous decision-making. To the extent that there is evidence that both members of a couple understand a decision, intend it, and that neither completely controls the other, couples’ joint decision-making should be viewed as consistent with the principle of respect for the woman’s autonomy. At the other end of the spectrum are decisions made by the man without the woman’s input, representing domination of one partner by the other. Conclusions We recommend viewing the dynamics of couples’ joint decision-making as existing on a continuum of degrees of autonomy. This continuum-based perspective implies that couples’ joint decision-making should not be taken at face value but should be assessed against the specific cultural, ethnic, and religious backgrounds and personal circumstances of the individuals in question. (shrink)

Brian Clark's drama, Whose Life Is It Anyway?, explores the difficulties of applying the principle of respect for autonomy to real-life circumstances. In the play a permanently disabled patient, who wishes to be allowed to die, raises moral questions about the adequacy of the autonomous agent, respect for the autonomy of others, the authority of the law, the allocation of society's resources, and the intrinsic value of human life. After a brief review of the story and definition of respect for (...) autonomy, this paper cites passages from the play that dramatize the tension between respect for autonomy and these other moral concerns. There follows a review of relevant commentary from the classicists Kant and Mill and the modernists Childress and Gillon. The study concludes that although classical and contemporary philosophers have clarified and elaborated upon the relationship between ethical principles, they have not provided definitive guidelines. (shrink)

This paper suggests that public health, due to its community orientation, may be ignoring certain ethical principles--namely the rights of individuals and communities to self-determination. The expectation of individual rights as a member of a community is reviewed and the additional right of a community for self-determination is proposed. The influences on ethical evaluations by the legal and economic environments are suggested, using US examples. The conclusion argues that as the focus of health-care delivery changes, it will become more important (...) to consider these questions of group ethics. (shrink)

An increase in autonomy and freedom is often considered one ofthe main arguments in favour of a broad use of genetic testing.Starting from Gerald Dworkin's reflections on autonomy and choicethis article examines some of the implications which accompanythe increase in choices offered by prenatal genetic diagnosis.Although personal autonomy and individual choice are importantaspects in the legitimation of prenatal genetic diagnosis, itseems clear that an increase in choice offered by prenatalgenetic diagnosis also leads to various implications that maynegatively influence the freedom (...) of the persons involved. (shrink)

Should a growing market for genetic self-tests be welcomed or feared? From the point of view of personal autonomy the increasing availability of predictive health information seems promising. Yet it is frequently pointed out that genetic information about future health may cause anxiety, distress and even loss of “life-hopes.” In this article the argument that genetic self-tests undermine personal autonomy is assessed and criticized. I contend that opportunities for autonomous choice are not reduced by genetic information but by misperceptions and (...) misunderstandings of the results of genetic tests. Since the interpretation of genetic information is sometimes distorted by the information provided about the genetic products, more attention should be given to deceitful marketing that overblows the utility of genetic products. Yet personal autonomy is reduced neither by genetic tests nor by genetic information and there is consequently no compelling case for the conclusion that genetic self-tests should be prohibited. (shrink)

South Africa is a major hub of HIV prevention trials, with plans for a licensure trial to start in 2015. The appropriate standards of care and of prevention in HIV vaccine trials are complex and debated issues and ethical guidelines offer some direction. However, there has been limited empirical exploration of South African stakeholders’ perspectives on ethical guidance related to prevention and care in HIV vaccine trials.

BackgroundRespect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of ‘relational autonomy’ may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative (...) care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.Main bodyHere, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.ConclusionThis article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices. (shrink)

There is an ongoing debate about the “ontology” of consent. Some argue that it is a mental act, some that it is a “hybrid” of a mental act plus behaviour that signifies that act; others argue that consent is a performative, akin to promising or commanding. Here it is argued that all these views are mistaken—though some more so than others. We begin with the question whether a normatively efficacious act of consent can be completed in the mind alone. Standard (...) objections to this “mentalist” account of consent can be rebutted. Here we identify a much deeper problem for mentalism. Normatively transformative acts of consent change others’ reasons for acting in a distinctive—“robust”—way. Robust reason-changing involves acts aimed at fulfilling a distinctive kind of reflexive and recognition-directed intention. Such acts cannot be coherently performed in the mind alone. Consent is not a mental act, but nor is it the signification of such an act. Acts of consent cannot be “completed” in the mind, and it is a mistake to view consent behaviour as making known a completed act of consent. The robust reason-changing account of consent developed here shares something with the performative theory, but is not saddled with a label whose home is philosophy of language. Certain kinds of performative utterance may change reasons robustly, but not all robust reason-changing involves or requires acts of speech, and consent can be effected by a wide range of behavioural acts. (shrink)

Abortion is the central issue in the conscientious objection debate. In this article I demonstrate why this is so for two philosophical viewpoints prominent in American culture. One, represented by Patrick Lee and Robert P. George, holds that the fundamental moral value of being human can be found in bare life and the other, represented by Tom Beauchamp and James Childress, holds that this fundamental value is found in the life that can choose and determine itself. First, I articulate Lee (...) and George’s philosophical theory and demonstrate how the fundamental moral value of their theory, personhood, is represented in the issue of abortion. Second, I examine Beauchamp and Childress’ theoretical vision and demonstrate how their fundamental moral value, the right to autonomous self-determination, is represented in abortion. Third, I sketch the theoretical and practical dynamics of the conscientious objection debate as well as each author’s understanding of conscience. Fourth, I demonstrate how abortion, which represents their respective fundamental value, shapes each perspectives’ approach to the conscientious objection debate. I conclude that because each theory finds its fundamental value represented in the issue of abortion, each perspective is bound to engage the conscientious objection debate in a way that centers on the issue of abortion. (shrink)

As children and adolescents receive increased research attention, ethical issues related to obtaining informed consent for pediatric intervention research have come into greater focus. In this article, we conceptualize parent permission and child assent within a goodness-of-fit framework that encourages investigators to create consent procedures “fitted” to the research context, the child's cognitive and emotional maturity, and the family system. Drawing on relevant literature and a hypothetical case example, we highlight four factors investigators may consider when constructing consent procedures that (...) best reflect participants' rights, concerns, and well-being: (a) the child's current assent capacity and the likely impact of study information on the child's mental and physical development, (b) parents' understanding of their child's treatment needs and distinctions between treatment and clinical trials research, (c) the family's history of shared decision making, and (d) the child's strivings for autonomy within the context of their parents' duty to make decisions in the child's best interest. (shrink)

In the literature three mechanisms are commonly distinguished to make decisions about the care of incompetent patients: A living will, a substituted judgment by a surrogate (who may or may not hold the power of attorney ), and a best interest judgment. Almost universally, the third mechanism is deemed the worst possible of the three, to be invoked only when the former two are unavailable. In this article, I argue in favor of best interest judgments. The evermore common aversion of (...) best interest judgments entails a risk that health care providers withdraw from the decision-making process, abandoning patients (or their family members) to these most difficult of decisions about life and death. My approach in this article is primarily negative, that is, I criticize the alleged superiority of the living will and substituted judgment. The latter two mechanisms gain their alleged superiority because they are supposedly morally neutral, whereas the best interest judgment entails a value judgment on behalf of the patient. I argue that on closer inspection living wills and substituted judgments are not morally neutral; indeed, they generally rely on best interest judgments, even if those are not made explicit. (shrink)

BackgroundInternationally, patient access to notes is increasing. This has been driven by respect for patient autonomy, often recognised as a primary tenet of medical ethics: patients should be able to access their records to be fully engaged with their care. While research has been conducted on the impact of patient access to outpatient and primary care records and to patient portals, there is no such review looking at access to hospital medical records in real time, nor an ethical analysis of (...) the issues involved in such a change in process.MethodsThis study employed a systematic review framework in two stems, to integrate literature identified from two searches: Medline, CINAHL and Scopus databases were conducted, (for (1) hospitalised patients, patient access to records and its effects on communication and trust within the doctor-patient relationship; and (2) patient access to medical records and the ethical implications identified). The qualitative and quantitative results of both searches were integrated and critically analysed.Results3954 empirical and 4929 ethical studies were identified; 18 papers representing 16 studies were identified for review (12 empirical and 6 ethical). The review reveals a consensus that our current approach to giving information to patients – almost exclusively verbally – is insufficient; that patient access to notes is a welcome next step for patient-centred care, but that simply allowing full access, without explanation or summary, is also insufficient. Several ethical implications need to be considered: increased information could improve patient trust and knowledge but might transfer an (unwelcome) sense of responsibility to patients; doctors and patients have conflicting views on how much information should be shared and when; sharing written information might increase the already significant disparity in access to health care, and have unforeseen opportunity costs. The impact on medical practice of sharing notes in real time will also need to be evaluated.ConclusionsThe review presents encouraging data to support patient access to medical notes. However, sharing information is a critical part of clinical practice; changing how it is done could have significant empirical and ethical impacts; any changes should be carefully evaluated. (shrink)

Bioethics influences public policy, scientific research, and clinical practice. Thinkers in Continental traditions have increasingly contributed scholarship to this field, and their approaches allow new insights and alternative normative guidance. In this essay, examples of the following Continental approaches in bioethics are presented and considered: phenomenology and existentialism; deconstruction; Foucauldian methodologies; and biopolitical analyses. Also highlighted are Continental feminisms and the philosophy of disability. Continental approaches are importantly diverse, but those I focus upon here reveal embedded models of individualized autonomy (...) in medical discourses and encourage awareness of medicine's normalizing edges, thereby drawing attention to lacunae in traditional bioethical frameworks. (shrink)

During the last two decades a broad and intensive discussion has taken place in the field of medical ethics. Especially in the English-speaking countries, “Biomedical Ethics” have developed as a part of secular, philosophical moral theory. Two ethical problems in organ transplantation – living organ donation and organ allocation – illustrate that this transition reflects both the complex ethical questions raised by rapid changes in the biological sciences and in health care, and the fact that traditional Hippocratic ethics have proven (...) to be inadequate in several respects. (shrink)

COVID-19 has turned many ethical principles and presuppositions upside down. More precisely, the principle of respect for autonomy has been shown to be ill suited to face the ethical challenges posed by the current health crisis. Individual wishes and choices have been subordinated to public interests. Patients have received trial therapies under extraordinary procedures of informed consent. The principle of respect for autonomy, at least in its mainstream interpretation, has been particularly questioned during this pandemic. Further reflection on the nature (...) and value of autonomy is urgently needed. Relational autonomy has been proposed as an alternative account of autonomy that can more adequately respond to contemporary ethical issues in general and to a pandemic such as the one we are currently facing in particular. As relational autonomy is an emerging notion in current bioethics, it requires further consideration and development to be properly operationalized. This paper aims to show how six different philosophical branches––namely, philosophy of nature, philosophical anthropology, existential phenomenology, discourse ethics, hermeneutics, and cultural anthropology––have incorporated the category of relation throughout the twentieth century. We first delve into primary philosophical sources and then apply their insights to the specific field of medical ethics. Learning from the historical developments of other philosophical fields may provide illumination that will enable bioethics to experience a successful “relational turn”, which has been partially initiated in contemporary bioethics but not yet achieved. (shrink)

Cesarean delivery rates have been steadily increasing worldwide. In response, many countries have introduced target goals to reduce rates. But a focus on target goals fails to address practices embedded in standards of care that encourage, rather than discourage, cesarean sections. Obstetrical standards of care normalize use of technology, creating an imperative to use technology during labor and birth. A technological imperative is implicated in rising cesarean rates if physicians or patients fear refusing use of technology. Reproductive autonomy is at (...) stake since a technological imperative undermines patients’ ability to choose cesareans or refuse use of technology increasing the likelihood of cesareans. To address practices driven by a technological imperative I outline three physician obligations that are attached to respecting patient autonomy. These moral obligations show that a focus on respect for autonomy may prove not only an ideal ethical response but also an achievable practical response to lowering cesarean rates. (shrink)

Telepsychiatry has long been discussed as a supplement to or substitute for face-to-face therapeutic consultations. The current pandemic crisis has fueled the development in an unprecedented way. More and more psychiatric consultations are now carried out online as video-based consultations. Treatment results appear to be comparable with those of face-to-face care in terms of clinical outcome, acceptance, adherence and patient satisfaction. However, evidence on videoconferencing in a variety of different fields indicates that there are extensive changes in the communication behaviour (...) in online conversations. We hypothesise that this might impact ethically relevant aspects of the therapeutic relationship, which plays a prominent role in psychiatry. In this paper, we review effects of video-based consultations on communication between therapists and patients in psychiatry. Based on a common understanding of video-based consultations as changing the lived experience of communication, we categorise these effects according to sensory, spatial and technical aspects. Departing from a power-based model of therapeutic relationships, we then discuss the ethical significance of this changed communication situation, based on dimensions of respect for autonomy, lucidity, fidelity, justice and humanity. We conclude that there is evidence for ethically relevant changes of the therapeutic relationship in video-based telepsychiatric consultations. These changes need to be more carefully considered in psychiatric practice and future studies. (shrink)

The global increase in patients with chronic conditions has led to increased interest in ethical issues regarding such conditions. A basic biomedical principle—respect for autonomy—is being reexamined more critically in its clinical implications. New accounts of this basic principle are being proposed. While new accounts of respect for autonomy do underpin the design of many public programs and policies worldwide, addressing both chronic disease management and health promotion, the risk of applying such new accounts to clinical setting remain understudied. However, (...) the application of new accounts of respect for autonomy to clinical settings could support disrespectful attitudes toward or undue interference with patients with chronic conditions. Reconsidering autonomy and respect using Kantian accounts, this paper proposes respect for persons as an alternative basic bioethical principle to respect for autonomy. Unlike the principle of respect for persons in the Belmont Report, our principle involves respecting any patient’s decisions, behaviors, emotions, or life-style regardless of his or her “autonomous” capabilities. Thus, attitudes toward patients should be no different irrespective of the assessment of their decisional or executive capabilities. (shrink)

This thesis discusses implications of framing bioethical concerns in international legal discourse. It starts from the observation that legal approaches to questions of bioethical relevance have become dominant frameworks for addressing many bioethical concerns at the international level. In particular, the UN General Assembly has long attempted to regulate human cloning processes through an international Convention. Similarly, UNESCO and the Council of Europe have both addressed a variety of bioethically relevant issues, such as the processing of human genetic data, the (...) ethics of research or organ transplantation within international legal standards. It is in the context of this strong connection between international law, international legal discourse and bioethics that this thesis seeks to analyse what exactly happens when issues of bioethical relevance are discussed within such a framework, how this affects the way bioethical issues are conceptualized, conceived of and dealt with, and, ultimately, how well-suited or successful international legal discourse is in its attempt to resolve current bioethical questions. Following the methodological approach of discourse theory, this thesis bases its analysis on the assumption that where and when international legal standards, as manifestations of an international legal discourse, serve as framework for bioethical debate that also somewhat defines how bioethically relevant issues are approached, thought of and dealt with within that framework, that it somewhat determines what methods are used to resolve such issues and that it somewhat limits the range of conceivable and viable solutions to these issue. The thesis thereby does not aim to demonise or abrogate legal approaches to bioethics and it does not understand the implications discussed in this thesis to be necessarily good or bad. To the contrary, it will be shown that legal approaches to bioethics can and have contributed to the development of the field in several important ways. Yet, this thesis also shows that it is worthwhile to closely examine implications that follow from a specific legal approach to bioethical issues as these implications are not always easily perceived. Given the important, and often dominant or near exclusive role of international law and legal discourse in the area of bioethics as well as the former's strong influence on bioethical debates as a whole, the implications of addressing questions of bioethical relevance within an international legal discourse should at least be understood and acknowledged, a contribution that this thesis aims to make. Moreover, only if these implications are understood is it possible to ask whether engaging in that type of discourse is at all a valuable enterprise and whether or not international legal standards directly addressed to questions of bioethical relevance constitute a suitable means to effectively address questions in the area of bioethics. (shrink)

Questions of individuality are traditionally predicated upon recognizing discrete entities whose behavior can be measured and whose value and agency can be meaningfully ascribed. We consider a series of challenges to the metaphysical concept of individuality as the ground of the self. We argue that an ecological conception of individuality renders ascriptions of autonomy to selves highly improbable. We find conceptual resources in the work of environmental philosopher Arne Naess, whose distinction between shallow and deep responses helps us rethink the (...) notion of individuality and, thus, assess whether the conceptual and normative coherence of human autonomy could, at least partially, be salvaged. (shrink)

Questions of individuality are traditionally predicated upon recognizing discrete entities whose behavior can be measured and whose value and agency can be meaningfully ascribed. We consider a series of challenges to the metaphysical concept of individuality as the ground of the self. We argue that an ecological conception of individuality renders ascriptions of autonomy to selves highly improbable. We find conceptual resources in the work of environmental philosopher Arne Naess, whose distinction between shallow and deep responses helps us rethink the (...) notion of individuality and, thus, assess whether the conceptual and normative coherence of human autonomy could, at least partially, be salvaged. (shrink)

The right to genetic privacy is presently being incorporated in legal systems all over the world. It remains largely unclear however what interests and values this right serves to protect. There are many different arguments made in the literature, yet none takes into account the problem of how particular values can be justified given the plurality of moral and religious doctrines in our societies. In this article theories of public reason are used in order to explore how genetic privacy could (...) be justified in a way that is sensitive to the “fact of pluralism”. The idea of public reason is specified as the idea that governments should appeal only to values and beliefs that are acceptable to all reasonable citizens in the justification of rights. In examining prevalent arguments for genetic privacy – based on the value of autonomy or on the value of intimacy – it is concluded that they do not meet this requirement. In dealing with this deficiency in the literature, an argument is developed that genetic privacy is fundamental to the democratic participation of all citizens. By referring to the preconditions of democratic citizenship, genetic privacy can be justified in a way that respects the plurality of comprehensive doctrines of morality and religion in contemporary societies. (shrink)