The COVID-19 pandemic has provoked new interest in the notion of vulnerability and in identifying alternative approaches for responding to vulnerable patients and populations during health emergencies. In this paper, I argue that the autonomy-based approach (the most dominant approach in bioethics) to responding to vulnerability during health emergencies is deficient because it focuses only on the interests, values, and decisions of the individual patient. It overly emphasizes respect for autonomy and not respect for the patient as it does not (...) consider the patient as a social and relational agent. Indeed, relational approaches to autonomy like the feminist and indigenous sub-Saharan African ethical approaches are promising alternatives. In this essay, I use the indigenous African relational approach to autonomy as an example of an alternative method which can be used to respond to vulnerability during a global health emergency like COVID-19. (shrink)

It has been hypothesised that the reimbursement system pertaining to radiotherapy is influencing prescription practices for patients with cancer with bone metastases. In this paper, we present and discuss the results of an empirical study that was undertaken on patient records, referred to radiotherapy for the treatment of bone metastases, in a medium-size city, in southern Brazil, during the period of March 2006 to March 2014. Our findings seem to confirm this hypothesis: after a change in the reimbursement method, radiation (...) prescriptions were adapted accordingly, in order to maximise profits. Once such patients become highly vulnerable due to their diagnoses, they also become susceptible to a subtle form of exploitation; physicians let patients believe that more radiation will be better for their health, and they do so despite knowing otherwise, and as it seems, out of pecuniary interests. (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)

This article provides a conceptual and normative framework through which we may understand the potentially ethically significant roles that information generated by neurotechnologies about our brains and minds may play in our construction of our identities. Neuroethics debates currently focus disproportionately on the ways that third parties may (ab)use these kinds of information. These debates occlude interests we may have in whether and how we ourselves encounter information about our own brains and minds. This gap is not yet adequately addressed (...) by most allusions in the literature to potential identity impacts. These lack the requisite conceptual or normative foundations to explain why we should be concerned about such effects or how they might be addressed. This article seeks to fill this gap by presenting a normative account of identity as constituted by embodied self-narratives. It proposes that information generated by neurotechnologies can play significant content-supplying and interpretive roles in our construction of our self-narratives. It argues, to the extent that these roles support and detract from the coherence and inhabitability of these narratives, access to information about our brains and minds engages non-trivial identity-related interests. These claims are illustrated using examples drawn from empirical literature reporting reactions to information generated by implantable predictive BCIs and psychiatric neuroimaging. The article concludes by highlighting ways in which information generated by neurotechnologies might be governed so as to protect information subjects’ interests in developing and inhabiting their own identities. (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 paper argues that social contexts of inequality are crucial to understanding the ethics of gestational harm and responsibility. Recent debates on gestational harm have largely ignored the social context of gestators, including contexts of inequality and injustice. This can reinforce existing social injustices arising from colonialism, socio‐economic inequality and racism, for example, through increased regulation of maternal behaviour. To demonstrate this, I focus on the related notions of the ‘future child’ and an obligation of easy rescue, which have been (...) used to discuss the ethics of gestational harm in the context of alcohol consumption during gestation and foetal alcohol spectrum disorder (FASD). I use a feminist perspective to evaluate these ideas and conclude that anyone concerned with remediation of social injustice has good reason to be suspicious of the notion of the future child in the context of gestational harm. (shrink)

We must reconceive the ethical relationship between mothers and their newborn babies. The intertwinement of mother and baby does not disappear with birth but rather persists in the form of postpartum maternal tethering. Drawing upon three years of ethnographic fieldwork and training in the United States and China, I argue that dependencies associated with postpartum maternal tethering make it extremely difficult for postpartum mothers to act autonomously, even in the relational sense. Breaching this tether opens up new possibilities for thinking (...) about the bioethics of vulnerability, dependency, and care by denaturalizing and desanctifying the mother-baby relationship and diversifying newborn care. (shrink)

The notion of vulnerable groups has gained relevance in international legal instruments while being criticised in philosophical literature for its disabling potential and disempowering consequences. The article argues that the category of group vulnerability should not be abandoned, being an opportunity for resistance, visibility, and a place for dissent: vulnerable groups can both function as a sounding board for claims and make demands for recognition, resetting the political agenda and the topics of public debate, and allow the level of collective (...) needs to emerge from the level of individual interests, thereby guaranteeing a fairer distribution of resources. For this purpose, the article provides two definitions of group vulnerability that avoid both the risks of essentialism and of labelling outcomes. The article also analyses the political value of vulnerable groups, highlighting that it is conceivable as an enabling condition, a source of political agency and mobilisation. (shrink)

Not all forms of human fragility or vulnerability are unavoidable. Sometimes we knowingly and intentionally impose conditions of vulnerability on others; and sometimes we knowingly and intentionally enter into and assume conditions of vulnerability for ourselves. In this article, I propose a presently overlooked basis on which one might evaluate whether the imposition or assumption of vulnerability is acceptable, and on which one might ground a significant class of vulnerability-related obligations. Distinct from existing accounts of the importance of promoting autonomy (...) in conditions of vulnerability, this article offers a preliminary exploration of the nature, role, and importance of resilience promotion, its relationship to autonomy promotion, and its prospects for improving human wellbeing in autonomy inhibiting conditions. (shrink)

Canada is six years into a new era of legalized medical assistance in dying (MAiD). The law continues to evolve, following a pattern in which Canadian courts rule that legal restrictions on eligibility for MAiD are unconstitutional and Parliament responds by gradually expanding eligibility for MAiD. The central tension underlying this dialogue between courts and government has focused on two conceptions of how to best promote and protect the interests of people who are vulnerable by virtue of intolerable and irremediable (...) suffering due to an illness, disease, or disability. Do we, as a society, have a duty to protect vulnerable people from seeking certain medical procedures that are contrary to their interests, as those are perceived by others? Or do we have a duty to uphold their rights to autonomy, including the right to make choices within a range that may be constrained by many factors, some of which may be socially unjust? This is a recurrent problem in bioethics and medical law, which we explore through the lens of how Canadian courts and Parliament have grappled with defining eligibility for MAiD. (shrink)

Using an approach developed in the context of human bioethics, we argue that chimpanzees in research can be regarded as vulnerable subjects. This vulnerability is primarily due to communication barriers and situational factors—confinement and dependency—that make chimpanzees particularly susceptible to risks of harm and exploitation in experimental settings. In human research, individuals who are deemed vulnerable are accorded special protections. Using conceptual and moral resources developed in the context of research with vulnerable humans, we show how chimpanzees warrant additional safeguards (...) against harm and exploitation paralleling those for human subjects. These safeguards should include empowering third parties to act as surrogate decision makers for chimpanzees, ensuring participant “assent,” and avoiding recruitment of animal subjects based merely on convenience. (shrink)

Our paper was written to highlight the need for mitigating vulnerability in COVID-19 tracing technology. As the pandemic was unravelling in mid 2020 and infection rates were rising steeply across the globe, we were following the news on emerging response measures and their social impact. We were alarmed by media reports regarding racial profiling and criminalization related to the implementation of physical distancing measures. Media reports documenting the fining of predominantly Black and Hispanic people in New York City, the closures (...) of Roma settlements in Spain, Slovakia, or Romania, or the disproportionate patrolling of migrant neighborhoods in Sydney, Australia, made it obvious that... (shrink)

The COVID-19 pandemic is affecting countries across the globe. Only a globally coordinated response, however, will enable the containment of the virus. Responding to a request from policy makers for ethics input for a global resource pledging event as a starting point, this paper outlines normative and procedural principles to inform a coordinated global coronavirus response. Highlighting global connections and specific vulnerabilities from the pandemic, and proposing standards for reasonable and accountable decision-making, the ambition of the paper is two-fold: to (...) raise awareness for the justice dimensions in the global response, and to argue for moving health from the periphery to the centre of philosophical debates about social and global justice. (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)

The contemporary industrialized global food system has sustained an onslaught of criticism from diverse parties—academic and popular, scientists and social justice advocates, activists and intellectuals—criticism that has only intensified in the late twentieth and early twenty-first centuries. Feminist voices have made substantial contributions to these critiques, calling attention to the cultural politics of food and health ; to the impact of the corporatization of agriculture on food quality, the environment, and the people of the Global South, especially women ; and (...) to the complicated relationship among cooking, eating, and gender, including how food.. (shrink)

This article critically examines the development and consensus outputs of the Concussion in Sport Group. We examine the six Consensus Statements between 2001 and 2023 to explore the challenges that the presence of contextual forces pose to the development of effective and ethically justifiable medical guidelines to manage situations involving brain-injured athletes. First, we discuss the implicit and explicit ethical framework and goals underlining the statements. Secondly, drawing on a relational account of athlete choice, we expound on the limitations of (...) the framework, concentrating on those resulting from a simplified understanding of athlete autonomy. Thirdly, we conclude by proposing a series of recommendations to improve concussion management protocols: (1) adopting a broader understanding of autonomy built upon relational accounts, beyond just the healthcare professional-athlete relationship; (2) further minimizing conflicts of interest that increase athletes’ vulnerability and hinder decision-making ability; (3) enhancing healthcare professional training to allow better adjustment of treatment plans to athletes’ contexts; and (4) promoting research on sociocultural elements affecting athletes’ vulnerability and autonomy. (shrink)

Background Mental healthcare users and patients were described as a particularly vulnerable group in the debate on the burdens of the COVID-19 pandemic. Just what this means and what normative conclusions can be derived from it depend to a large extent on the underlying concept of vulnerability. While a traditional understanding locates vulnerability in the characteristics of social groups, a situational and dynamic approach considers how social structures produce vulnerable social positions. The situation of users and patients in different psychosocial (...) settings during the COVID-19 pandemic has not yet been comprehensively considered and ethically analyzed under the aspect of situational vulnerability. Methods We present the results of a retrospective qualitative analysis of a survey of ethical challenges in different mental healthcare facilities of a large regional mental healthcare provider in Germany. We evaluate them ethically using a dynamic and situational understanding of vulnerability. Results Difficulties in implementing infection prevention measures, restrictions of mental health services in favor of infection prevention, social isolation, negative health effects on mental healthcare users and patients, and challenges in implementing regulations on state and provider levels within the local specificities emerged across different mental healthcare settings as ethically salient topics. Conclusions Applying a situational and dynamic understanding of vulnerability allows the identification of specific factors and conditions that have contributed to an increased context-dependent vulnerability for mental healthcare users and patients. These factors and conditions should be considered on the level of state and local regulations to reduce and address vulnerability. (shrink)

Background Notwithstanding the need to produce evidence-based knowledge on medications for pregnant women, they remain underrepresented in clinical research. Sometimes they are excluded because of their supposed vulnerability, but there are no universally accepted criteria for considering pregnant women as vulnerable. Our aim was to explore whether and if so to what extent pregnant women are vulnerable as research subjects. Method We performed a conceptual and empirical analysis of vulnerability applied to pregnant women. Analysis A conceptual analysis supports Hurst's definition (...) of vulnerability. Consequently, we argue that pregnant women are vulnerable if they encounter an identifiably increased likelihood of incurring additional or greater wrong. According to the literature, this increased likelihood could exist of four alleged features for pregnant women's vulnerability: informed consent, susceptibility to coercion, higher exposure to risk due to lack of knowledge, vulnerability of the fetus. Discussion Testing the features against Hurst's definition demonstrates that they all concern the same issue: pregnant women are only vulnerable because a higher exposure to risk due to lack of scientific knowledge comprises an increased wrong. Research Ethics Committees have a responsibility to protect the vulnerable, but a higher exposure to risk due to lack of scientific knowledge is a much broader issue and also needs to be addressed by other stakeholders. Conclusions The only reason why pregnant women are potentially vulnerable is to the extent that they are increasingly exposed to higher risks due to a lack of scientific knowledge. Accordingly, the discussion can advance to the development of practical strategies to promote fair inclusion of pregnant women in clinical research. (shrink)

The principle of vulnerability is a specific principle within European Bioethics. On the one hand, vulnerability expresses human limits and frailty on the other hand it represents moral and ethical action principles. In this paper a discussion on the relationship between the concepts of autonomy, vulnerability and responsibility is proposed and presentation of some possible applications of the principle of vulnerability within bioethics. In conclusion, some potential benefits of applying the principle of vulnerability as well as possible difficulties in its (...) application are highlighted. (shrink)

The study of the neuroscience and genomics of mental illness are increasingly intertwined. This is mostly due to the translation of medical technologies into psychiatry and to technological convergence. This article focuses on psychosis. I argue that the convergence of neuroscience and genomics in the context of psychosis is morally problematic, and that ethics scholarship should go beyond the identification of a number of ethical, legal, and social issues. My argument is composed of two strands. First, I argue that we (...) should respond to technological convergence by developing an integrated, patient-centred approach focused on the assessment of individual vulnerabilities. Responding to technological convergence requires that we integrate insights from several areas of ethics, translate bioethical principles into the mental health context, and proactively try to anticipate future ethical concerns. Second, I argue that a nuanced understanding of the concept of vulnerability might help us to accomplish this task. I borrow Florencia Luna’s notion of ‘layers of vulnerability’ to show how potential harms or wrongs to individuals who experience psychosis can be conceptualised as stemming from different sources, or layers, of vulnerability. I argue that a layered notion of vulnerability might serve as a common ground to achieve the ethical integration needed to ensure that biomedical innovation can truly benefit, and not harm, individuals who suffer from psychosis. (shrink)

In this article, I lend support to Miranda Fricker's work in social epistemology from a post-Kantian point of view. In Epistemic Injustice: Power and The Ethics of Knowing, Fricker writes that, at times, social power, rather than the actual possession of knowledge, determines whether a speaker is believed (Fricker, 2007, 1-2). I will develop Miranda Fricker's project in feminist epistemology by examining the post-Kantian linguistic sign with a view to showing how G.W.F. Hegel and Jacques Derrida transform the Kantian analytic/synthetic (...) contrast in their semiologies. Epistemic injustice arises not only from cultural stereotypes and impoverished categories of identity but, also, from the dynamic way that language generates meaning. (shrink)

The concept of vulnerability has become widely acknowledged as a fundamental concept for medical ethics and research ethics, yet rarely considered with respect to ethical assessments of human germline genome editing. A first aim of this paper is to make vulnerability ethics considerations fruitful for issues related to these technical innovations. The possibility of altering the genome promises to overcome forms of vulnerability inherently connected to our existence as physical beings and would hence allow to increase the resilience of human (...) nature or even to move evolution forward by equipping people with new character traits and enhanced capabilities. I suggest a more fine-grained distinction of various applications purposes than the dichotomy of therapeutic and enhancement. I support the rejection of most application purposes as ‘therapeutic’ and claim that framing them as ‘therapeutic’ in the context of the current discursive constellation runs the risk of accentuating existing vulnerabilities. With respect to intergenerational responsibilities, I reject the view that editing the germline necessarily leads to corrupt intergenerational relations based on which it must be categorically excluded. I conclude that it is nevertheless important to take a very close look at the challenges that arise, especially from a vulnerability perspective, before irreversible facts are created overhastily. (shrink)

BackgroundHealthcare is permeated by phenomena of vulnerability and their ethical significance. Nonetheless, application of this concept in healthcare ethics today is largely confined to clinical research. Approaches that further elaborate the concept in order to make it suitable for healthcare as a whole thus deserve renewed attention.MethodsConceptual analysis.ResultsTaking up the task to make the concept of vulnerability suitable for healthcare ethics as a whole involves two challenges. Firstly, starting from the concept as it used in research ethics, a more detailed (...) characterization and systematization of the different realms of human abilities and the various ways in which these realms contain vulnerability is to be established. Secondly, at the same time, the sought-after concept of vulnerability should avoid picturing the relation between healthcare recipient and provider as a relation between a dependent individual in need and another individual capable of providing all the help necessary. An adequate concept of vulnerability should enable one to understand when and in which respects care providers may be vulnerable as well. Philosophical accounts of vulnerability can help to meet both of these challenges.ConclusionsPhilosophical accounts of vulnerability can help to make the concept of vulnerability suitable for healthcare ethics as a whole. They come with a price, though. While the ethical role of vulnerability in medical ethics usually is to signify states of affairs that are to be diminished or overcome, philosophical accounts introduce forms of vulnerability that are regarded as valuable. Further analyzing and systematizing forms and degrees of vulnerability thus comprises the task to distinguish between amounts and types of vulnerability that can count as valuable, and amounts and types of vulnerability that are to be alleviated. (shrink)

Healthcare is permeated by phenomena of vulnerability and their ethical significance. Nonetheless, application of this concept in healthcare ethics today is largely confined to clinical research. Approaches that further elaborate the concept in order to make it suitable for healthcare as a whole thus deserve renewed attention. Conceptual analysis. Taking up the task to make the concept of vulnerability suitable for healthcare ethics as a whole involves two challenges. Firstly, starting from the concept as it used in research ethics, a (...) more detailed characterization and systematization of the different realms of human abilities and the various ways in which these realms contain vulnerability is to be established. Secondly, at the same time, the sought-after concept of vulnerability should avoid picturing the relation between healthcare recipient and provider as a relation between a dependent individual in need and another individual capable of providing all the help necessary. An adequate concept of vulnerability should enable one to understand when and in which respects care providers may be vulnerable as well. Philosophical accounts of vulnerability can help to meet both of these challenges. Philosophical accounts of vulnerability can help to make the concept of vulnerability suitable for healthcare ethics as a whole. They come with a price, though. While the ethical role of vulnerability in medical ethics usually is to signify states of affairs that are to be diminished or overcome, philosophical accounts introduce forms of vulnerability that are regarded as valuable. Further analyzing and systematizing forms and degrees of vulnerability thus comprises the task to distinguish between amounts and types of vulnerability that can count as valuable, and amounts and types of vulnerability that are to be alleviated. (shrink)

:Although recent literature on professionalism in healthcare abounds in recommended character traits, attitudes, or behaviors, with a few exceptions, the recommendations are untethered to any serious consideration of the contours and ethical demands of the healing relationship. This article offers an approach based on the professional’s commitment to trustworthiness in response to the vulnerability of those seeking professional help. Because our willingness and ability to trust health professionals or healthcare institutions are affected by our personality, culture, race, age, prior experiences (...) with illness and healthcare, and socioeconomic and political circumstances—“the social determinants of trust”—the attitudes and behaviors that actually do gain trust are patient and context specific. Therefore, in addition to the commitment to cultivating attitudes and behaviors that embody trustworthiness, professionalism also includes the commitment to actually gaining a patient’s or family’s trust by learning, through individualized dialogue, which conditions would win their justified trust, given their particular history and social situation. (shrink)

This paper reflects on the three main ethical challenges we faced when conducting digital ethnography in three autism Brazilian communities on Facebook: how to position oneself as a researcher, how...

Patient-centered care is now recognized as a clinical method and ideal model for patient – health professional relationships, and many definitions have influenced its evolution. Overall the patient-centered care literature has provided relatively little to define patient-centered care at the level of the patient-professional relationship. Additionally, patient-centered care lacks grounding in ethical theory. This thesis asserts that theoretical concepts from the ethics of care can provide a stronger conceptual basis for patient-centered care.This thesis begins with a critical interpretive review of (...) the patient-centered care literature, yielding 12 articles that previously introduced new theoretical and definitional work on patient-centered care and patient-centered communication. Six common themes and ideas were discovered, and include Engaging the Patient as a Whole Person, Recognizing and Responding to Emotions, Fostering a Therapeutic Alliance, Promoting an Exchange of Information, Sharing Decision Making, and Enabling Self-Management and Patient Navigation. These elements were then compared to key elements of the ethics of care. This thesis argues that feminists have good reason to consider care as a type of moral duty, and it describes how this duty functions. This thesis also argues that a duty to care is triggered when caregivers are presented with particular substantive forms of vulnerability. Specifically, this thesis argues that vulnerable subjects whose constitutive needs are at risk require particular moral obligations. The links between the ethics of care and patient-centered care are discussed, including how an ethics of care response ought to function in the health care context. Finally, the cases of J.J. and Makayla Sault, two aboriginal girls who refused chemotherapy in favour of traditional aboriginal healing practices, are analyzed. This thesis offers a short scoping review of the bioethics discourse surrounding these cases. A review of this discourse revealed several common themes, which included the peripheral importance of culture and history, the equating of best interests with survival, the supremacy of science-based medicine, and the impartial application of ethical principles. This thesis recommends that health care professionals apply an ethics of care approach to similar ethical dilemmas in the future, which involves shifting one's ethical focus to the central relationships of the case, understanding the unique perspective of the patient's narrative, and promoting a care-based rather than a justice-based approach to problem-solving. (shrink)