Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a “living (...) ethics”, described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process. (shrink)

Animals are an important part of our social, economic and corporate world. Their wellbeing is significantly affected by the ways in which humans treat them. However, animals have long remained (and, indeed, continue to remain) effectively invisible in the business ethics and corporate responsibility discourse. This article argues in favor of the moral necessity of according animal welfare a higher priority in business. In line with most streams in both recent and traditional animal ethics, this article derives the avoidance of (...) unnecessary animal suffering as the moral minimum standard for responsible management in the livestock industry. Based on a broad range of different interpretations of what animal suffering may be necessary, the article discusses three distinct ways in which humans working in the animal industry could meet their moral responsibility to avoid unnecessary suffering, and, with this, increase animal welfare: by ameliorating circumstances for animals, by aiming at a two-pronged transformation, or by transforming into a “zero-suffering” business. Considering animal welfare as a legitimate ethical value in and of itself is a first step towards overcoming the anthropocentric bias in today's sustainability and corporate responsibility debate. (shrink)

Background:In China, the conventional family-based ageing care model is under pressure from social transitions, raising the question of whether and to what extent families are still capable of dealing with the care of the aged.Objective:This article examines the vulnerability and inadequacy of families to bear responsibility for the care of the aged against a backdrop of socioeconomic transformation and diminishing institutional support in rural China.Research design:This article adopts an empirical ethical approach that integrates empirical investigation with ethical inquiry.Participants and research (...) context:The empirical component of this article focuses on the lived experiences of caring for a wife and mother with dementia in one rural Chinese family, collected from a 6-month fieldwork study conducted at one primary hospital.Ethical considerations:Approval was obtained from the university ethics committee.Findings:The empirical study highlights a conflicted family process of managing and negotiating care that indicates the inadequacies and limited ability of families to deal with aged care tasks. In addition, inadequate structures and institutional deficiencies exacerbate the vulnerability of rural families and their inability to offer adequate care.Conclusion:Acknowledging the vulnerability of families as ageing care providers, this article calls for a socially supported family care model for rural older people in China and also proposes policy recommendations. (shrink)

This paper attempts to philosophically articulate empirical evidence on the positive effects of illness within the wider context of a discussion of the positive aspects of vulnerability. The conventional understanding holds that to be vulnerable is to be open to harms and wrongs; it is to be fragile, defenseless, and of compromised autonomy. In this paper, we challenge the assumption that vulnerability consists of nothing but powerlessness and dependence on others. This paper attempts to: (1) outline the theoretical conceptualisation of (...) the positive aspects of coping with illness, while simultaneously showing how these findings provide empirical support for some classical philosophical ideas; (2) influence a change in the manners in which the ill are usually perceived (as weak, dependent, robbed of a good life) and (3) point to the importance of modernising the prevalent biomedical conception of illness with the subjective dimension of health. Biomedical understanding of illness focuses on the vulnerable experience of the sufferer, suggesting the importance of philosophical additions. (shrink)

The post-Soviet scene in Lithuania is one of rapid change in medical and nursing ethics. A short introduction to the current background sets the scene for a wider discussion of ethics in health care professionals' education. Lithuania had to adapt rapidly from a politicized nursing and ethics curriculum to European regulations, and from a paternalistic style of care to one of engagement with choices and dilemmas. The relationships between professionals, and between professionals and patients, are affected by this in particular. (...) This short article highlights these issues and how they impact on all involved. (shrink)

Vulnerability has become a popular though controversial topic in bioethics, notably since 2000. As a result, a common body of knowledge has emerged distinguishing between different types of vulnerability, criticizing the categorization of populations as vulnerable, and questioning the practical implications. It is argued that two perspectives on vulnerability, i.e., the philosophical and political, pose challenges to contemporary bioethics discourse: they re-examine the significance of human agency, the primacy of the individual person, and the negativity of vulnerability. As a phenomenon (...) of globalization, vulnerability can only be properly addressed in a global bioethics that takes the social dimension of human existence seriously. (shrink)

In contemporary liberal ethics patient autonomy is often interpreted as the right to self-determination: when it comes to treatment decisions, the patient is given the right to give or withhold informed consent. This paper joins in the philosophical and ethical criticism of the liberal interpretation as it does not regard patient autonomy as a right, rule or principle, but rather as a practice. Patient autonomy, or so I will argue, is realised in the concrete activities of day-to-day health care, in (...) the material and technological context of care, in arrangements of health care institutions, in the physical training of people with disabilities, as well as in the concrete activities of care-giving. This move from conversations in the consultation room to other sites and situations in the practice of care takes seriously the empirical reality of medical care and intends to show that patient autonomy is practically realised in a much richer and more creative way than most ethical theory seems to assume. (shrink)

BackgroundSince 2006, the genetic testing company 23andMe has collected biological samples, self-reported information, and consent documents for biobanking and research from more than 1,000,000 individuals, through a direct-to-consumer online genetic-testing service providing a genetic ancestry report and a genetic health report. However, on November 22, 2013, the Food and Drug Administration halted the sale of genetic health testing, on the grounds that 23andMe was not acting in accordance with federal law, by selling tests of undemonstrated reliability as predictive tests for (...) medical risk factors. Consumers could still obtain the genetic ancestry report, but they no longer had access to the genetic health report in the United States. However, this did not prevent the company from continuing its health research, with previously obtained and future samples, provided that consent had been obtained from the consumers concerned, or with health reports for individuals from other countries. Furthermore, 23andMe was granted FDA authorization on February 19, 2015, first to provide reports about Bloom syndrome carrier status, and, more recently, to provide consumers with “carrier status” information for 35 genes known to cause disease.DiscussionIn this Debate, we highlight the likelihood that the primary objective of the company was probably two-fold: promoting itself within the market for predictive testing for human genetic diseases and ancestry at a low cost to consumers, and establishing a high-value database/biobank for research and personal information).SummaryBy dint of this marketing approach, a two-sided market has been established between the consumer and the research laboratories, involving the establishment of a database/DNA biobank for scientific and financial gain. We describe here the profound ethical issues raised by this setup. (shrink)

Background Although it is the moral duty of physicians to protect vulnerable patients, there are no data on how vulnerability is perceived in clinical practice. This study explores how physicians classify someone as “vulnerable”. Method Thirty-three physicians were initially questioned about resource allocation problems in their work. The results of these interviews were examined with qualitative study software to identify characteristics associated with vulnerability in patients. Data were conceptualized, classified and cross-linked to highlight the major determinants of vulnerability. The findings (...) revealed the principal factors that make patients vulnerable in clinical practice, according to our definition of vulnerability: the likelihood of having one’s interests unjustly considered. Results Vulnerability can arise as a result of a mismatch between the characteristics of patients and physicians, the healthcare system, the treatment, or the communication between physicians and patients. Vulnerability appears as a gap between a patient’s needs and the means intended to meet them. Vulnerability can further be the result of doing too little or too much for patients. This result suggests that structures provided by healthcare systems are not as differentiated as they should be to cover all situations. Our initial definition of vulnerability was illustrated and supported by our results, showing that it encompasses all factors involved, not solely personal characteristics, indicating the need for a more pragmatic approach for use in clinical practice. Conclusion Vulnerability is not due to a single factor but appears under certain circumstances when there is a discrepancy between a patient’s interests and the care provided, despite existing compensation systems. (shrink)

In this paper, I explore the meaning of bodily integrity in disfiguring breast cancer. Bodily integrity is a normative principle precisely because it does not simply refer to actual physical or functional intactness. It rather indicates what should be regarded and respected as inviolable in vulnerable and damageable bodies. I will argue that this normative inviolability or wholeness can be based upon a person's embodied experience of wholeness. This phenomenological stance differs from the liberal view that identifies respect for integrity (...) with respect for autonomy (resulting in an invalidation of bodily integrity's proper normative meaning), as well as from the view that bodily integrity is based upon ideologies of wholeness (which runs the risk of being disadvantageous to women). I propose that bodily integrity involves a process of identification between the experience of one's body as “Leib” and the experience of one's body as “Körper.” If identification fails or is not possible, one's integrity is threatened. This idea of bodily integrity can support breast cancer patients and survivors in making decisions about possible corrective interventions. To implement this idea in oncology care, empirical-phenomenological research needs to establish how breast cancer patients express their embodied self-experiences. (shrink)

The paper reports results of the very first survey-based study on the prevalence, frequency and nature of ethical or other non-medical difficulties faced by Polish physicians in their everyday clinical practice. The study involved 521 physicians of various medical specialties, practicing mainly in inpatient healthcare. The study showed that the majority of Polish physicians encounter ethical and other non-medical difficulties in making clinical decisions. However, they confront such difficulties less frequently than their foreign peers. Moreover, Polish doctors indicate different circumstances (...) as a source of the experienced problems. The difficulties most often reported relate to (i) patients (or their proxies) requests for medically non-indicated interventions; (ii) problems with communication with patients (or their proxies) due to the patients’ negative attitude, unwillingness to cooperate, or aggression; and (iii) various difficulties with obtaining informed consent. Polish physicians report difficulties associated with disagreements among care givers or scarcity of resources less frequently than doctors from other countries. The study’s findings provide support for the thesis that a significant portion of Polish physicians still follow a traditional, paternalistic, and hierarchical model of healthcare practice. Instead of promoting patient’s empowerment, engagement, and rights, they often consider these ideas as a threat to physicians’ professional authority and autonomy. The study leads to the conclusion that due to insufficient training in medical ethics, communication skills, and medical law, many Polish physicians lack the knowledge and competence necessary to adequately respond to challenges posed by modern healthcare practice. (shrink)

Both living donor transplantation and human subjects research expose one set of individuals to clinical risks for the clinical benefits of others. In the Belmont Report, the National Commission for the Protection of Human Subjects of Biomedical and Behavior Research articulated three principles to serve as the basis for a research ethics framework: respect for persons, beneficence and justice. In contrast, living donor transplantation lacks a framework. In this manuscript, we adapt the three principles articulated in the Belmont Report to (...) serve as the foundation for an ethics framework for living donor transplantation which we supplement with the principles of vulnerability and responsibility. The National Commission supported additional protections for vulnerable groups of potential research participants. In 2001, Kenneth Kipnis effectively argued that the concept of vulnerable groups failed to explore in what ways particular groups of people were vulnerable, thereby risking unnecessary protections for some and inadequate protections for others. He proposed a taxonomy that explored different types of vulnerabilities that all research participants may experience to provide a more robust framework for human subjects protections, which we adapt to living donors. Robert Goodin claims that health professionals, who stand in special relationship with patients, are responsible for promoting and protecting their well-being. In living donor transplantation, the donor transplant team is responsible for empowering prospective donors to address their vulnerabilities and/or for protecting those who cannot by disqualifying them from donation. (shrink)

Concern for human vulnerability seems to be at the heart of bioethical inquiry, but the concept of vulnerability is under-theorized in the bioethical literature. The aim of this article is to show why bioethics needs an adequately theorized and nuanced conception of vulnerability. We first review approaches to vulnerability in research ethics and public health ethics, and show that the bioethical literature associates vulnerability with risk of harm and exploitation, and limited capacity for autonomy. We identify some of the challenges (...) emerging from this literature: in particular, how to reconcile universal human vulnerability with a context-sensitive analysis of specific kinds and sources of vulnerability; and how to reconcile obligations to protect vulnerable persons with obligations to respect autonomy. We then briefly survey some of the theoretical resources available within the philosophical literature to address these challenges, and to assist in understanding the conceptual connections between vulnerability and related concepts such as harm, exploitation, needs, and autonomy. We also sketch out a taxonomy of sources and kinds of vulnerability. Finally, we consider the implications for policy evaluation of making vulnerability an explicit and central focus of bioethics. Our investigation is in the form of a broad survey motivating a research agenda rather than a detailed analysis. (shrink)

It is not uncommon for patients with advanced disease to express a wish to hasten death. Qualitative studies of the WTHD have found that such a wish may have different meanings, none of which can be understood outside of the patient’s personal and sociocultural background, or which necessarily imply taking concrete steps to ending one’s life. The starting point for the present study was a previous systematic review of qualitative studies of the WTHD in advanced patients. Here we analyse in (...) greater detail the statements made by patients included in that review in order to examine their moral understandings and representations of illness, the dying process and death. We identify and discuss four classes of assumptions: assumptions related to patients’ moral understandings in terms of dignity, autonomy and authenticity; assumptions related to social interactions; assumptions related to the value of life; and assumptions related to medicalisation as an overarching context within which the WTHD is expressed. Our analysis shows how a philosophical perspective can add to an understanding of the WTHD by taking into account cultural and anthropological aspects of the phenomenon. We conclude that the knowledge gained through exploring patients’ experience and moral understandings in the end-of-life context may serve as the basis for care plans and interventions that can help them experience their final days as a meaningful period of life, restoring some sense of personal dignity in those patients who feel this has been lost. (shrink)

Today local, national and international ethics committees have become an effective means of social regulation in many European countries. Science itself is an important precondition for the development of bioethical knowledge and ethics expertise. Cultural, social, historical and religious preconditions can facilitate different forms and methods of ethics expertise in each country. Ukrainian ethics expertise has some methodological problems connected with its socio-cultural, historical, science and philosophy development particularities. In this context, clarification of some common legitimacies or methodological approaches to (...) ethics committee (EC) phenomena such as globalization, scientization and the prioritization of an ethics paradigm are very important. On the other hand, elaborate study and critical analysis of international experience by Ukraine and other Eastern European countries will provide the integration of their local and national ethics expertises into a world bioethics ethos. (shrink)

The paper presents a comparative analysis of the evolution of the legislative process concerning ART in the specific cultural, societal and political contexts of two countries- Slovakia and Germany. Our analysis is based on 1. mapping the variety of discourses on ART in order to gain an understanding of the perspectives of the main actors and their arguments; and on 2. exploring the reasons for the differences in the current regulation of ART among European Union member states. In both Slovakia (...) and Germany we found there was a deficit of democratic legitimacy, because the arguments and experiences of those primarily affected by the restrictive measures on the use of ART in medical care-infertile women and men-are not taken into consideration with any seriousness. On the contrary, government and legislators pay too much attention to the ethical opinions of the Catholic Church. Government intervention in Germany is highly problematic because there is no sufficient justification of the reasons behind restrictions on parental autonomy and the procreative freedom of women and men. Moreover, the restrictions are not consistent across an array of similar cases and are not applied equally to all. Instead of an interventionist approach which protects the embryo against its own potential mother, it would be more sensible to adopt the “women-centered” approach already suggested by several authors. It holds that both the mother and embryo have to be at the centre of bioethical and legal considerations, instead of there being an exclusive reliance on ethical principles and expert opinions with regard to the embryo alone. (shrink)

Solidarity belongs to the basic principles of Catholic Social Teaching (CST) and is part of the ethical repertoire of European moral traditions and European healthcare systems. This paper discusses how leaders of Catholic healthcare organizations (HCOs) can understand their institutional moral responsibility with regard to the preservation of solidarity. In dealing with this question, we make use of Taylor's philosophy of modern culture. We first argue that, just as all HCOs, Catholic ones also can embody and strengthen solidarity by just (...) doing their quintessential job, that is, to care for people with ill health. Second, we focus on the Catholic identity of these organizations and argue that this characteristic can empower a radical commitment to solidarity. Finally, we argue that CST provides a critical ethical framework for approaching solidarity from the perspective of the common good. (shrink)

Patients in need of palliative care are often described as vulnerable. Being vulnerable can sometimes be interpreted as the opposite of being autonomous, if an autonomous person is seen as an independent, self-sufficient person who forms decisions independently of others. Such a dichotomous view can create a situation where one has experiences of vulnerability that cannot be reconciled with the central ethical principle of autonomy. The article presents a feminist ethical perspective on the conceptualisation of vulnerability in the context of (...) palliative care. It does so through the lens of the concepts of inherent and pathogenic vulnerability from the taxonomy on vulnerability suggested by Mackenzie et al. To differentiate between forms of vulnerability, is important since even though vulnerability can be regarded as a shared life condition it can be the product of practices creating harm to the patient. The article also presents an analysis of how vulnerability can be included in the interpretation of the ethical principle of autonomy, in order to be relevant in palliative care where vulnerability is salient, namely, as relational autonomy. Furthermore, two practical implications for nursing practice are suggested. Firstly, to acknowledge vulnerability as a shared life condition one needs training in order to neither be overwhelmed by one’s own vulnerability, nor become invulnerable when facing vulnerability in others. Secondly, to foster relational autonomy includes navigating between the patient exercising their autonomy within a framework of relations, and shielding the patient from paternalistic practices. Nurses could be particularly suited for this role, which includes creating an environment which is open and supportive; navigating between patient, family and staff; seeing and acknowledging the complex situation in which patient autonomy is actually played out; and promoting patient autonomy. (shrink)

This essay roughly sketches two major conceptions of autonomy in contemporary bioethics that promote the resourcification of human body parts: (1) a narrow conception of autonomy as self-determination; and (2) the conception of autonomy as dissociated from human dignity. In this paper I will argue that, on the one hand, these two conceptions are very different from that found in the modern European tradition of philosophical inquiry, because bioethics has concentrated on an external account of patient’s self-determination and on dissociating (...) dignity from internal human nature. However, on the other hand, they are consistent with more recent European philosophy. In this more recent tradition, human dignity has gradually been dissociated from contextual values, and human subjectivity has been dissociated from objectivity and absolutized as never to be objectified. In the concluding part, I will give a speculative sketch in which Kant’s internal inquiry of maxim of ends, causality and end, and dignity as irreplaceability is recombined with bioethics’ externalized one and used to support an extended human resourcification. (shrink)

Concerns arising from global sociopolitical differences, and increasing economic and health disparities, have brought new considerations to the field of bioethics, both in terms of applications and to foundational concepts such as exploitation and vulnerability.In this paper, we aim to contribute to the discourse on exploitation and vulnerability in a way that reflects such global changes. We will explore the link between vulnerability and exploitation, and argue that exploitation can be understood as taking advantage of vulnerabilities, provided we recognize that (...) vulnerabilities are often embedded within existing structural injustices.We begin by presenting an example of organ trading, which helps to illustrate .. (shrink)

Bioethics has changed considerably over the last few years. Increased global interaction, through the off-shoring of clinical trials, cross-border surrogacy, organ trafficking, and medical tourism, among others practices, has brought additional considerations to a discipline that has been, until recently, relatively contained within national borders. We aim to contribute to the discourse on exploitation and vulnerability in a way that reflects such global changes. We will explore the link between vulnerability and exploitation, and argue that exploitation can be understood as (...) taking advantage of vulnerabilities, provided we recognize that vulnerabilities are often embedded within existing structural injustices. (shrink)

Endeavors have been made to found and incorporate ethical values in most aspects of healthcare, including health technology assessment. Health technologies and their assessment are value-laden and could trigger problems with dissemination if they contradict societal norms. Per WHO definition, preconception expanded carrier screening is a new health technology that warrants assessment. It is a genetic test offered to couples who have no known risk of recessive genetic diseases and are interested pregnancy. A test may screen for carrier status of (...) several autosomal recessive diseases and X-linked at one go. The technique has been piloted in the Netherlands and is discussed in other countries. The aim of the study was to examine values and value conflicts that healthcare experts recounted in relation to the discussion of implementation and use of preconception ECS in Sweden. We interviewed ten experts, who were associated with influencing health policymaking in Sweden. We employed systematizing expert interviews, which endeavor to access experts’ specialist knowledge. There were four female and six male informants, of which four were physicians, three bioethicists, one a legal expert, one a theologian and one a political party representative in the parliament. The participants functioned as members of two non-governmental bodies and three governmental organizations. We employed thematic analysis to identify themes, categories and subcategories. Two main themes surfaced: values and value conflicts. The main categories of Respect for persons, Solidarity, Human dignity, Do no harm, Health and Love formed the first theme, while values conflicting with autonomy and integrity respectively, constituted the second theme. Concepts relating to respect for persons were the most commonly mentioned among the participants, followed by notions alluding to solidarity. Furthermore, respondents discussed values conflicting with Swedish healthcare ones such as equality and solidarity. The experts highlighted values and concepts that are distinctive of welfare states such as Sweden and delineated how preconception ECS could challenge such values. Moreover, the analysis revealed that certain values were deemed more substantive than others, judging by the extent and detail of inference; for example, respect for persons and solidarity were on top of the list. (shrink)

Risk analysis and regulatory systems are usually evaluated according to utilitarian frameworks, as they are viewed to operate “objectively” by considering the health, environmental, and economic impacts of technological applications. Yet, the estimation of impacts during risk analysis and the decisions in regulatory review are affected by value choices of actors and stakeholders; attention to principles such as autonomy, justice, and integrity; and power relationships. In this article, case studies of biotechnology are used to illustrate how non-utilitarian principles are prominent (...) in risk analysis and regulatory review and to argue that these relationships should be carefully considered as we consider nanotechnology oversight systems for its products. We argue that there are not distinct separations between “science-based” review systems, in which evaluations of the consequences of technological products are primarily considered, and principles of integrity, justice, non-maleficence, and autonomy. It should further be expected that, given research into fair treatment during decision-making processes, attention to ethics will affect how citizens assess emerging technologies. Finally, a more holistic approach for evaluating oversight systems for the products of nanotechnology is suggested, one which does not draw a sharp distinction between risk analysis, regulation, and respect for non-utilitarian values. (shrink)

Although precision medicine cuts across a large spectrum of professions, interdisciplinary and cross-sectorial moral deliberation has yet to be widely enacted, let alone formalized in this field. In a recent research project on precision medicine, we designed a dialogical forum (i.e. ‘the Ethics Laboratory’) giving interdisciplinary and cross-sectorial stakeholders an opportunity to discuss their moral conundrums in concert. We organized and carried out four Ethics Laboratories. In this article, we use Simone de Beauvoir’s concept of moral ambiguity as a lens (...) to frame the participants’ experience with fluid moral boundaries. By framing our approach through this concept we are able to elucidate irremediable moral issues that are collectively underexplored in the practice of precision medicine. Moral ambiguity accentuates an open and free space where different types of perspectives converge and can inform each other. Based on our study, we identified two dilemmas, or thematic interfaces, in the interdisciplinary moral deliberations which unfolded in the Ethics Laboratories: (1) the dilemma between the individual and the collective good; and (2) the dilemma between care and choice. Through our investigation of these dilemmas, we show how Beauvoir’s concept of moral ambiquity not only serves as a fertile catalyst for greater moral awareness but, furthermore, how the concept can become an indispensable part of the practices of and the discourse about precision medicine. (shrink)

The four principles approach to biomedical ethics points to respect for autonomy, beneficence, non-maleficence and justice as the norms that should guide moral agents working in the biosciences, and particularly in health care. While the approach is well known, it is not without its critics. In this paper, which is primarily aimed at health professionals and students (from various disciplines) who are studying health care ethics, I consider four problems with the four principles, which respectively claim that the approach is (...) imperialist, inapplicable, inconsistent and inadequate. In keeping with the aims of the ‘five-minute focus’, the primary objective is to introduce these debates, rather than seek to resolve them. However, I will suggest that the approach does have its merits, not least for time-pressed clinicians who are keen to keep an eye on the ethical dimensions of their practices, and for students training in the health care professions, provided that they appreciate that the approach provides only a starting point for, and not the end point of, moral deliberation. (shrink)

Despite broad agreement that the vulnerable have a claim to special protection, defining vulnerable persons or populations has proved more difficult than we would like. This is a theoretical as well as a practical problem, as it hinders both convincing justifications for this claim and the practical application of required protections. In this paper, I review consent-based, harm-based, and comprehensive definitions of vulnerability in healthcare and research with human subjects. Although current definitions are subject to critique, their underlying assumptions may (...) be complementary. I propose that we should define vulnerability in research and healthcare as an identifiably increased likelihood of incurring additional or greater wrong. In order to identify the vulnerable, as well as the type of protection that they need, this definition requires that we start from the sorts of wrongs likely to occur and from identifiable increments in the likelihood, or to the likely degree, that these wrongs will occur. It is limited but appropriately so, as it only applies to special protection, not to any protection to which we have a valid claim. Using this definition would clarify that the normative force of claims for special protection does not rest with vulnerability itself, but with pre-existing claims when these are more likely to be denied. Such a clarification could help those who carry responsibility for the protection of vulnerable populations, such as Institutional Review Boards, to define the sort of protection required in a more targeted and effective manner. (shrink)

Fertility treatments, which are part of "assisted reproductive technologies" (ART), mainly undertaken through in vitro fertilization (IVF), offer the opportunity to infertile couples to conceive. IVF treatments are undertaken in Israel in significantly higher numbers than in the rest of the world. As such, Israel provides an important case-in-point for examining the validity of the actual claims used to justify the more generous public funding of IVF treatments at the policy level. In this article, we utilize an analytical philosophy approach (...) to conduct this examination. First, we highlight two fundamental concepts that were used at the Israeli public policy level in order to justify the generous public funding of IVF treatments. These concepts are “emotional vulnerability” and the “worthlessness of the childless,” where the latter emphasizes the infinite value of children. Then, by applying the perspective of the European model of Bioethical Principlism, and focusing the attention to these two concepts we show that these justifications are invalid. Specifically, it is suggested that these concepts are on the one hand both relying on and expressing the principles of vulnerability, dignity, and integrity; yet on the other hand, these concepts are also undermining the very principles of bioethics they are supposed to express and rely on. Based on this suggested criticism, we offer two “take home” messages informed by our analysis of the Israeli case, but reaching beyond it. (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)

Conflict of interests in medicine are typically taken to be financial in nature: it is often assumed that a COI occurs when a healthcare practitioner’s financial interest conflicts with patients’ interests, public health interests, or professional obligations more generally. Even when non-financial COIs are acknowledged, ethical concerns are almost exclusively reserved for financial COIs. However, the notion of “interests” cannot be reduced to its financial component. Individuals in general, and medical professionals in particular, have different types of interests, many of (...) which are non-financial in nature but can still conflict with professional obligations. The debate about healthcare delivery has largely overlooked this broader notion of interests. Here, we will focus on health practitioners’ moral or religious values as particular types of personal interests involved in healthcare delivery that can generate COIs and on conscientious objection in healthcare as the expression of a particular type of COI. We argue that, in the healthcare context, the COIs generated by interests of conscience can be as ethically problematic, and therefore should be treated in the same way, as financial COIs. (shrink)

Empirical findings from a Swedish longitudinal screening study show that many of the research subjects had a limited understanding of the study. Nevertheless they were satisfied with the understanding they had and found it sufficient for informed continued participation. Were they wrong? In this paper, it is argued that the kind of understanding that is morally required depends partly on the kind of understanding on which the research subjects want to base their decisions, and partly on what kind of knowledge (...) they lack. Researchers must ensure that the information process is not flawed and that participants receive the information they want. To achieve this, new information efforts may be needed. Researchers must also ensure that research subjects have knowledge about aspects of importance to them. Lack of understanding may, however, be the result of conscious choices by research subjects to disregard some of the information because it is not important to them. Such choices should normally be respected. (shrink)

The decision to involuntary hospitalize a patient underlines an inherent contradiction in psychiatry between the need for care and the lack of consent to care. The growing importance of respect for...

Transhumanism is a challenging movement that invites us to rethink what defines humanity, including what we value and regret the most about our existence. Vulnerability is a key concept that require thorough philosophical scrutiny concerning transhumanist proposals. Vulnerability can refer to a universal condition of human life or, rather, to the specific exposure to certain harms due to particular situations. Even if we are all vulnerable in the first sense, there are also different sources and levels of vulnerability depending on (...) concrete social circumstances. Recently, Michael Hauskeller argued about a fundamental incompatibility between transhumanism and vulnerability. He understands vulnerability as an existential category, linked to woundability and mortality. This idea is akin to ontological vulnerability, but it does not notice some important features of social vulnerability. On the other side, transhumanism is a complex and non-homogeneous movement. Here we distinguish between a strong and a weak version of transhumanism. We will propose that the salience of vulnerability is only diminished in the radical one, while a moderate version can reconcile vulnerability with human enhancement. Thus, vulnerability, a concept that has recently gained much importance as an anthropological category in contemporary ethics, is not necessarily at odds with any transhumanist project. (shrink)

Person‐centred care is founded on ethics as a basis for organizing care. In spite of healthcare systems claiming that they have implemented person‐centred care, patients report less satisfaction with care. These contrasting results require clarification of how to practice person‐centred ethics using Paul Ricoeur's ‘Little ethics’, summarized as: ‘aiming for the good life, with and for others in just institutions’. In this ethic Kantian morality is at once subordinate and complementary to Aristotelian ethics because the ethical goal needs to be (...) critically assessed and passed through the examination of the norm in each care situation. This paper presents examples that describes a person‐centred care practice that balance a critical review of care activities based on a conviction of aiming for patients' wellbeing. In contrast to patients' experiences of person‐centred care in real life, research projects have shown that if the clinical performers comprehend and apply the practice of person‐centred ethics, patients report positive outcomes. The implementation of person‐centred care therefore demands that stakeholders and managers enables and requires that healthcare staff study ethics in the same way as studying for example pharmacology is required when handling patients' medicines. (shrink)

David Hollenbach, working within the context of human rights theory, has developed the notion of "indigenous pluralism" as a means of coping with the problems that arise when different religious traditions hold distinct or incompatible interpretations of human rights. It will be argued that indigenous pluralism is a theoretically and practically useful concept for bioethics as well and hence should be incorporated into bioethical methodology and processes of bioethical policy formation. Subsequently, the notion of indigenous pluralism will be discussed in (...) relation to determinations of death as a means of illustrating this concept's applicability to bioethical inquiry. (shrink)

The goal of this paper is to propose a relational turn in healthcare professionalism, to improve the responsiveness of both healthcare professionals and organizations towards care of patients, but also professionals. To this end, it is important to stress the way in which difficult situations and vulnerability faced by professionals can have an impact on their performance of work. This article pursue two objectives. First, I focus on understanding and making visible shared vulnerability that arises in clinical settings from a (...) triple perspective: patient and family, health professionals, and institutions. Second, to address this challenge for professionalism, in this paper I articulate the term "relational centered-patient professionalism", which has two main axes. The relational approach means taking into account how the relationships among professionals, patients and institutions determine the constitution and evolution of those professional values. The focus on patient centered care is indispensable, because it is the ultimate goal pursued by the development of these professional values, and must always be at the center. (shrink)

This article assesses the similarity and difference between the Western European style of doing bioethics and the Scandinavian one. First, it reviews the introductory article by the editor, C. Delkeskamp-Hayes in the first issue of Christian Bioethics , devoted to the possibility of a specifically Christian bioethics in Europe. Second, it analyses bioethics debates in Scandinavian today. In light of Delkeskamp-Hayes' article, the main similarity is that both regions are facing secularization as a threat to basic Christian values, for example, (...) to the Christian view of the sanctity and dignity of the human life. But the Scandinavian tends to reduce Christian bioethics to Luther's concept of the worldly kingdom, supposed to foster a dialogue between Christians and non-Christians on controversial ethical issues. Despite the positive value of the dialogue, this strategy renders Christian ethics powerless. Third, from an evangelical theological standpoint, it proposes some strategies for enhancing the influence of Christian commitments on bioethical laws and policies. (shrink)

Drawing on Lennart Nordenfelt’s distinction between the four distinct senses of dignity, I elucidate the meaning of dignity in the context of research involving human subjects. I acknowledge that different interpretations of the personal senses of dignity may be acceptable in human subject research, but that inherent dignity (Menschenwürde) is not open to interpretation in the same way. In order to map out the grounds for interpreting dignity, I examine the unique application of the principle of respect for dignity in (...) Canada’s research ethics guidelines. These guidelines are unique because they consider dignity to be a foundational concept and the protection of the dignity of research subjects is regarded as a measure that prevents “the impoverishment of humanity as a whole”. While the conception of humanity invoked here is incomplete, Canada’s research ethics guidelines nevertheless represent a more European approach to biomedical policy. Finally, in order to correct a pervasive blind spot in contemporary policy on research involving human subjects, I sketch a functional model for attributing inherent dignity that avoids the untenable connotations of speciesism. (shrink)

The patient–physician relationship is of primary importance for medical ethics, but it also teaches broader lessons about ethics generally. This is particularly true for the philosopher Emmanuel Levinas whose ethics is grounded in the other who “faces” the subject and whose suffering provokes responsibility. Given the pragmatic, situational character of Levinasian ethics, the “face of the other” may be elucidated by an analogy with the “face of the patient.” To do so, I draw on examples from Martin Winckler’s fictional physician (...) narratives. In addition, I explore how the standpoint of the physician conceals a related but often unacknowledged dimension of care: the obligation to nurse. For both nurse and physician, one question encapsulates Levinas’ medical ethics: “What does the patient say?” Using this as my guiding question, I examine the context within which physician, nurse, and patient meet in order to highlight their shared vulnerability and the care relationship that binds them together. (shrink)

Human rights have increasingly been put forward as an important framework for bioethics. In this paper, it is argued that human rights offer a potentially fruitful approach to understanding the notion of Respect for Persons in bioethics. The idea that we are owed a certain kind of respect as persons is relatively common, but also quite often understood in terms of respecting people’s autonomous choices. Such accounts do however risk being too narrow, reducing some human beings to a second-class moral (...) status. This paper puts forward a political approach to our standing as persons and a strongly pluralistic account of human rights that lays the ground for a more broadly applicable conception of Respect for Persons. It is further argued that this model also provides an example of a more general approach to philosophical ethics, an approach which is here called taxonomical pluralism. When it comes to Respect for Persons specifically, this principle is developed in terms of five distinct core concerns. (shrink)

Genetic information about one individual often has medical and reproductive implications for that individual’s relatives. There is a debate about whether policy on transmitting genetic information within the family should change to reflect this shared aspect of genetic information. Even if laws on medical confidentiality remain unchanged, there still remains the question of professional practice and whether, to what extent and by what means professionals should encourage disclosure within a family. The debate so far has tended to focus on who (...) has a right to genetic information, or has a right to decline genetic information, frequently drawing on the notion of individual autonomy. There are significant divergences within this debate, and difficulties with the use of autonomy in this context have been noted. This paper draws on theoretical considerations as well as on qualitative empirical data to show that shifting from talk of autonomy to talk of integrity will greatly enrich and illuminate the issues. It becomes possible to gain deeper insights into the ethical significance of the timing and the manner of such communication, the character of recipients of knowledge, and the nuanced nature of communication and different levels of understanding within a family. (shrink)

The Danish healthcare system must meet the need for easy and equal access to healthcare for every citizen. However, investigations have shown unfair prioritization of cancer patients and unfair prioritization of resources for expensive medicines over care. What is needed are principles for proper prioritization. This article investigates whether American ethicists Tom Beauchamp and James Childress’s principle of justice may be helpful as a conceptual framework for reflections on prioritization of expensive biological therapies in the Danish healthcare system. We present (...) an empirical study exploring the principles for prioritizing new expensive biological therapies. This study includes qualitative interviews with key Danish stakeholders experienced in antibody therapy and prioritizing resources for expensive medicines. Beauchamp and Childress’s model only covers government-funded primary and acute healthcare. Based on the interviews, this study indicates that to be helpful in a Danish context this model should include equal access for citizens to government-funded primary and acute healthcare, costly medicine, and other scarce treatments. We conclude that slightly modified, Beauchamp and Childress’s principle of justice might be useful as a conceptual framework for reflections on the prioritization of expensive biological therapies in the Danish healthcare system. (shrink)

Ethical and legal discourse pertaining to the ability to consent to treatment and research in England operates within a dualist framework of “competence” and “capacity”. This is confusing, as while there exists in England two possible senses of legal capacity – “first person” legal capacity and “delegable” legal capacity, currently neither is formulated to bear a necessary relationship with decision-making competence. Notwithstanding this, judges and academic commentators frequently invoke competence to consent in discussions involving the validity of offering or withholding (...) consent as a synonym for legal capacity to consent. I argue that this gives rise to a conflation, jeopardising clarity and consistency in law. This is somewhat less problematic in instances of “first-person” legal capacity that are heavily informed by criteria for decision-making competence than in the second sense of legal capacity, which is qualitatively different from decision-making competence, or with first-person legal capacity when defined in different terms from competence. The paper concludes by proposing that the soundest resolution to this problem is by making decision-making competence a necessary and sufficient condition of first-person legal capacity, affording a more scrupulous distinction between the two different forms of legal capacity that exist. (shrink)

This article assesses the similarity and difference between the Western European style of doing bioethics and the Scandinavian one. First, it reviews the introductory article by the editor, C. Delkeskamp-Hayes in the first issue of Christian Bioethics (2008), devoted to the possibility of a specifically Christian bioethics in Europe. Second, it analyses bioethics debates in Scandinavian today. In light of Delkeskamp-Hayes' article, the main similarity is that both regions are facing secularization as a threat to basic Christian values, for example, (...) to the Christian view of the sanctity and dignity of the human life. But the Scandinavian tends to reduce Christian bioethics to Luther's concept of the worldly kingdom, supposed to foster a dialogue between Christians and non-Christians on controversial ethical issues. Despite the positive value of the dialogue, this strategy renders Christian ethics powerless. Third, from an evangelical theological standpoint, it proposes some strategies for enhancing the influence of Christian commitments on bioethical laws and policies. (shrink)

Maternal mortality is still very high in Africa, despite progress in control efforts at the global level. One elemental link is the question of autonomy in maternal health, especially at the household level where intrinsic human rights are undermined. A rights-based consideration in bioethics is an approach that holds the centrality of the human person, with a compelling reference to the fundamental human rights of every person. A philosophical and sociological engagement of gender and the notion of autonomy within the (...) household reveals some fundamental rights-based perplexities for bioethical considerations in maternal health. The right to self-determination is undermined, and therefore women’s dignity, freedom and autonomy, capacities, and choices are easily defiled. This study applies a rights-based approach to maternal health and demonstrates how rights concerns are associated with negative outcomes in maternal health in Africa. The discussion is situated at the household level, which is the starting point in health care. The paper submits that beyond legal and political rights within the context of the state, rights-based issues manifest at the household level. Many of those rights issues, especially relating to women’s autonomy, are detrimental to maternal health in Africa. Therefore, a rights-based approach in the social construction of maternal health realities will contribute to alleviating the burden of maternal mortality in Africa. (shrink)

Background Chemotherapy and/or radiotherapy treatments may cause premature ovarian failure and irreversible loss of fertility. In the context of childhood cancers, it is now acknowledged that possible negative effects of therapies on future reproductive autonomy are a major concern. While a few options are open to post-pubertal patients, the only immediate option currently open to pre-pubertal girls is cryopreservation of ovarian tissue and subsequent transplantation. The aim of the study was to address a current gap in knowledge regarding the offer (...) of fertility preservation by Ovarian Tissue Cryopreservation for prepubescent girls with cancer, and to explore current practices and attitudes of Canadian, French and Moroccan pediatric heme oncologists. The comparative perspective is relevant since legal frameworks surrounding fertility preservation and funding offered by the healthcare system vary greatly. Methods An online survey was sent to the 45 pediatric oncology centers in Canada, France and Morocco. Results A total of 39 centers responded. OTC is offered by almost all pediatric heme oncologists in France, very few in Canada, and none in Morocco. For pediatric hematologists/oncologists who do not propose fertility preservation in Canada, the reasons are: the technique is still experimental, it is not available locally and cost of the technique for the family. 97% of Canadian and 100% of Moroccan pediatric hematologists/oncologists think OTC should be funded by the healthcare system as it is in France and in the province of Quebec in Canada. Conclusions The results of this study show tremendous diversity in the provision of OTC across countries, whereby its offer is correlated with legislation and funding. We argue that the current reality, in which this technology is often not offered to families, raises ethical issues related to justice and equity of access, as well as informed consent and future reproductive autonomy. (shrink)