How social media impacts the autonomy of its users is a topic of increasing focus. However, much of the literature that explores these impacts fails to engage in depth with the philosophical literature on autonomy. This has resulted in a failure to consider the full range of impacts that social media might have on autonomy. A deeper consideration of these impacts is thus needed, given the importance of both autonomy as a moral concept and social media as a feature of (...) contemporary life. By drawing on this philosophical literature, we argue that autonomy is broadly a matter of developing autonomy competencies, having authentic ends and control over key aspects of your own life, and not being manipulated, coerced, and controlled by others. We show how the autonomy of users of social media can be disrespected and harmed through the control that social media can have over its users’ data, attention, and behaviour. We conclude by discussing various recommendations to better regulate social media. (shrink)

This paper will highlight how the existing approaches to the Strawman Fallacy and the Principle of Charity are unable to fully accommodate the problems of interpreting children’s arguments. A lack of charity is as problematic as an excess of charity when arguing with children, and can contribute to misinterpretation of arguments. An application of moderate charity avoids the pitfalls of misrepresenting children. However, interpreting children’s arguments with the appropriate amount of charity is a challenging task. The argumentative context is relevant (...) in determining the interpretive approach and the extent of charity that can be justified. The context of arguing with children necessitates an Ethics of Care-based approach to interpretation. Michael Gilbert’s concept of coalescent argumentation exemplifies how Ethics of Care can be realized during argumentative exchanges involving children. (shrink)

Institutional review boards, tasked with facilitating ethical research, are often pulled in competing directions. In what we call the protection-inclusion dilemma, we acknowledge the tensions IRBs face in aiming to both protect potential research participants from harm and include under-represented populations in research. In this manuscript, we examine the history of protectionism that has dominated research ethics oversight in the United States, as well as two responses to such protectionism: inclusion initiatives and critiques of the term vulnerability. We look at (...) what we know about IRB decision-making in relation to protecting and including “vulnerable” groups in research and examine the lack of regulatory guidance related to this dilemma, which encourages protection over inclusion within IRB practice. Finally, we offer recommendations related to how IRBs might strike a better balance between inclusion and protection in research ethics oversight. (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)

This article suggests that those individuals typically acknowledged as vulnerable during public health crises, such as pandemics, are often-times doubly so. I suggest that individuals can be vulnerable in a person-affecting way as well as in a personhood-affecting way. I suggest that the former notion of vulnerability coincides with many existing accounts of vulnerability and that subsequently, many of the more standard arguments for moral and justice-based obligations to minimize such vulnerability, hold. I also suggest that the latter notion of (...) vulnerability adds another layer of vulnerability to those that we typically view to be at risk. I argue that personhood-vulnerability constitutes a novel interpretation of vulnerability than expands our ideas of the kinds of harm that emerge during public health crises. (shrink)

The High Court continues to exercise its inherent jurisdiction to make declarations about interventions into the lives of situationally vulnerable adults with mental capacity. In light of protective responses of health care providers and the courts to decision-making situations involving capacitous vulnerable adults, this paper has two aims. The first is diagnostic. The second is normative. The first aim is to identify the harms to a capacitous vulnerable adult’s autonomy that arise on the basis of the characterisation of situational vulnerability (...) and autonomy as fundamentally opposed concepts or the failure to adequately acknowledge the conceptual relationship between them at common law. The second part of this aim is to draw upon developments in analytic feminist philosophy to illustrate how standard approaches to autonomy are ill-equipped to capture the autonomy issues of capacitous vulnerable adults when their decisions regarding care and treatment are at stake. The second (normative) aim is to develop an account of self-authorised, intersubjective autonomy on the basis of analytic feminist insights into the relational practices of recognition. This account not only attempts to capture the autonomy of capacitous vulnerable adults and account for the necessary harms to their autonomy that arise from standard common law responses to their situational vulnerability, it is also predicated on the distinctions between mental capacity, the satisfaction of conditions for informed consent and the exercise of autonomy, meaning that it is better placed to fulfil the primary aim of the inherent jurisdiction – to facilitate the autonomy of vulnerable adults with capacity. (shrink)

In this paper I engage with the notion that Covid-19 can be seen as the ‘great equalizer’, in virtue of the widespread sense of uncertainty it has caused and the fact that it has forced us to recognize our shared human fragility. Against the view that Covid-19 is the ‘great equalizer’, I argue that, on the contrary, the pandemic reflects existing vulnerabilities and, in many cases, exacerbates them. I do so by offering first a definition of both ontological and relational (...) vulnerability and discussing some important ethical and political dimensions of vulnerability in conditions of uncertainty. I then claim that understanding vulnerability in both ontological and relational terms allows us to see the differential impact of the pandemic on differently situated individuals. More specifically, I argue that vulnerability in conditions of uncertainty can threaten individuals’ sense of self, and thus their autonomy – both understood in relational terms. I consider what kind of response human vulnerability in times of crisis calls for. In particular, I maintain that a promising way to counteract uncertainty would be to adopt a solidaristic approach to public health, based on an understanding of solidarity as a relational concept. In other words, I argue that it is through solidarity that individuals’ vulnerabilities can be mitigated, and their autonomy promoted, even during the most uncertain times. I finally discuss two objections that could be raised against the solidaristic approach defended in my paper. First, the approach may fail to find the support of individuals who are unwilling to care for others when their own interests are under threat. Second, there might be those who deny that the virus constitutes a serious enough threat to warrant or justify the restrictions on individual freedoms imposed by governments in the name of solidarity. I conclude by arguing that while a commitment to solidarity can be easily undermined by scepticism towards political and other authorities, and by the failures of those authorities themselves, it is paramount that societies strive for it as the best means to preserve individuals’ health, autonomy, and well-being. (shrink)

Nossa seleção de verbetes parte do interesse de cada pesquisador e os dispomos de maneira histórico-cronológica e, ao mesmo tempo, temática. O verbete de Melissa Lane, “Filosofia Política Antiga” vai da abrangência da política entre os gregos até a república e o império, às portas da cristianização. A “Filosofia Política Medieval”, de John Kilcullen e Jonathan Robinson, é o tópico que mais demanda espaço na nossa seleção em virtude das disputas intrínsecas ao período, da recepção de Aristóteles pelo medievo e (...) da tensão entre poder Papal e Civil. No verbete “Liberalismo”, de Gerald Gaus, Shane Courtland e David Schmidtz, vemos as fontes fundantes da Filosofia Política da modernidade. As ideias de liberdade negativa e positiva se coadunam com a Ética Liberal e sua influência sobre a abrangência do valor fundamental da liberdade individual diante das políticas públicas. O texto de Ian Carter, “Liberdade Positiva e Liberdade Negativa”, expõe o paradoxo da liberdade em suas concepções valorativas e neutra, muito úteis para compreender os problemas políticos que enfrentamos hoje. Por fim, Bas Van Der Vossen no texto “Libertarianismo” trata das noções tensas entre Estado e indivíduos. A concepção de “liberdade de si”, genuinamente negativa, ganha destaque justificatório. Jackie Scully, no verbete Bioética Feminista, exemplifica o valor da influência dessas correntes no âmago de todos os contemporâneos. Sua escrita homenageia postumamente Anne Donchin com um apanhado histórico da luta de inserção de políticas feministas na pesquisa acadêmica global. No verbete “Democracia”, os professores brasileiros Gustavo Dalaqua e Alberto Ribeiro Barros acrescentaram tópicos importantes ao tema geral, respectivamente: “Construtivismo Representativo vs. Representação Descritiva” e “Democracia Contestatória de Philip Pettit”. O texto de Thomas Christiano perpassa os principais argumentos de justificação política contra e a favor da democracia ocidental, com foco central nas concepções de liberdade e igualdade. Os verbetes dispostos nessa seleção de textos são tendenciosos na medida que expressam o interesse genuíno de cada pesquisador com os assuntos relevantes em suas pesquisas. Em virtude disso, a escolha “adota um lado” em detrimento de outros – mais especificamente: de outro que poderia ser mais “progressista”. Por si só, o livro já nasce reclamando um segundo volume, que será providenciado. Colocamos de lado qualquer exigência de “imparcialidade”, algo que não existe na Filosofia, muito menos na Filosofia Política. Sobressai, nesse aspecto, o caráter reflexivo que o assunto exige e a importância do assunto, sem o qual não teríamos a modernas concepções de representatividade, as teorias da justiça ou mesmo as ciências sociais. Um outro volume, portanto, se faz imperativo, por conta da abrangência da própria SEP e do respeito a seu projeto inicial, genuinamente um plano plural. (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)

While some trust theorists have adverted to the vulnerabilities involved in trust, especially vulnerability to betrayal, the literature on trust has not engaged with recent work on the ethics of vulnerability. This paper initiates a dialogue between these literatures, and in doing so begins to explore the complex interrelations between vulnerability and trust. More specifically, it aims to show how trust can both mitigate and compound vulnerability. Through a discussion of two examples drawn from literary sources, the paper also investigates (...) the effects of pathogenic vulnerability on the psychic economies of trust and distrust. (shrink)

Social media companies commonly design their platforms in a way that renders them addictive. Some governments have declared internet addiction a major public health concern, and the World Health Organization has characterized excessive internet use as a growing problem. Our article shows why scholars, policy makers, and the managers of social media companies should treat social media addiction as a serious moral problem. While the benefits of social media are not negligible, we argue that social media addiction raises unique ethical (...) concerns not raised by other, more familiar addictive products, such as alcohol and cigarettes. In particular, we argue that addicting users to social media is impermissible because it unjustifiably harms users in a way that is both demeaning and objectionably exploitative. Importantly, the attention-economy business model of social media companies strongly incentivizes them to perpetrate this wrongdoing. (shrink)

Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health and (...) Policy-relevant Ethics in Singapore Initiative. It presents the aim and rationale for this framework supported by the underlying ethical concerns that relate to all health and research contexts. It also describes a set of substantive and procedural values that can be weighed up in addressing these concerns, and a step-by-step process for identifying, considering, and resolving the ethical issues arising from big data uses in health and research. This Framework is subsequently applied in the papers published in this Special Issue. These papers each address one of six domains where big data is currently employed: openness in big data and data repositories, precision medicine and big data, real-world data to generate evidence about healthcare interventions, AI-assisted decision-making in healthcare, public-private partnerships in healthcare and research, and cross-sectoral big data. (shrink)

Refugees and asylum seekers may experience challenges related to pre-arrival experiences, structural disadvantage after migration and during resettlement requiring the need for special protection when participating in research. The aim was to review if and how people with refugee and asylum seeker backgrounds have had their need for special protection addressed in national and international research ethics guidelines. A systematic search of grey literature was undertaken. The search yielded 2187 documents of which fourteen met the inclusion criteria. Few guidelines addressed (...) specific ethical considerations for vulnerable groups much less people with refugee and asylum seeker backgrounds. One guideline explicitly addressed vulnerability for refugees and asylums seekers. To ensure members of ethics committees and researchers consider the potential challenges of conducting research with these groups, guidelines may need to be supplemented with a refugee and asylum seeker specific research ethics framework. Such a framework may be necessary to optimally protect people with refugee and asylum seeker backgrounds in research. (shrink)

The rapidly expanding aging population presents an urgent global challenge cutting through just about every dimension of worldly life, including the social, political, cultural, and economic. Developing innovations in health and assistive technology (AT) are poised to support effective and sustainable health care in the face of this challenge, yet there is scant (but growing) discussion of the ethical issues surrounding AT for older persons with dementia. Demands for ethical frameworks that can respond to frontline dilemmas regarding AT development and (...) provision, and how the needs of aging persons themselves are defined throughout this development process, are increasing. This article suggests that fulfilling the promises of AT to provide effective and ethically informed solutions may demand shifting away from standard bioethical analyses that centralize the principle of respect for autonomy. An autonomy-centric paradigm is dubiously equipped to theorize the foundational ethical issues in dementia care and to effectively guide AT development and implementation. An agency-centered approach to dementia care, which could engage more adaptively with the perspectives and choices of older persons themselves while offering strong support to AT research and stakeholders, may offer an attractive alternative. (shrink)

Breast cancer screening aims to help women by early identification and treatment of cancers that might otherwise be life-threatening. However, breast cancer screening also leads to the detection of some cancers that, if left undetected and untreated, would not have damaged the health of the women concerned. At the time of diagnosis, harmless cancers cannot be identified as non-threatening, therefore women are offered invasive breast cancer treatment. This phenomenon of identifying non-harmful cancers is called overdiagnosis. Overdiagnosis is morally problematic as (...) it leads to overall patient harm rather than benefit. Further, breast cancer screening is offered in a context that exaggerates cancer risk and screening benefit, minimises risk of harm and impedes informed choice. These factors combine to create pathogenic vulnerability. That is, breast cancer screening exacerbates rather than reduces women’s vulnerability and undermines women’s agency. This paper provides an original way of conceptualising agency-supporting responses to the harms of breast cancer overdiagnosis through application of the concept of pathogenic vulnerability. (shrink)

This article presents an overview for clinician investigators on the concepts of decision-making capacity and vulnerability as related to human subjects research. Tools for capacity assessment and unacknowledged sources of vulnerability are discussed, and the practical gaps in current informed consent requirements related to impaired capacity and potential vulnerability are described. Options are suggested for research discussions when full regulatory consent is not possible and an exception from informed consent does not apply.

There is a consensus that the effects of medical brain drain, especially in the Sub-Saharan African countries, ought to be perceived as more than a simple misfortune. Temporary restrictions on the emigration of health workers from the region is one of the already existing policy measures to tackle the issue—while such a restrictive measure brings about the need for quite a justificatory work. A recent normative contribution to the debate by Gillian Brock provides a fruitful starting point. In the first (...) step of her defence of emigration restrictions, Brock provides three reasons why skilled workers themselves would hold responsibilities to assist with respect to vital needs of their compatriots. These are fair reciprocity, duty to support vital institutions, and attending to the unintended harmful consequences of one’s actions. While the first two are explained and also largely discussed in the literature, the third requires an explication on how and on which basis skilled workers would have a responsibility as such. In this article, I offer a vulnerability approach with its dependency aspect that may account for why the health workers in underserved contexts would have a responsibility to attend to the unintended side effects of their actions that may lead to a vital risk of harm for the population. I discuss HIV/AIDS care in Zimbabwe as a case in point in order to show that local health workers may have responsibilities to assist the population who are vulnerable to their mobility. (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)

The concept of vulnerability is deployed in bioethics to, amongst other things, identify and remedy harms to participants in research, yet although nonhuman animals in experimentation seem intuitively to be vulnerable, this concept and its attendant protections are rarely applied to research animals. I want to argue, however, that this concept is applicable to nonhuman animals and that a new taxonomy of vulnerability developed in the context of human bioethics can be applied to research animals. This taxonomy does useful explanatory (...) work, helping to pinpoint the limitations of the 3Rs/welfare approach currently adopted in the context of animal experimentation. On this account, the 3Rs/welfare approach fails to deliver for nonhuman animals in experimentation because it effectively addresses only one element of their vulnerability (inherent) and paradoxically through the institution of Animal Ethics Committees intended to protect experimental animals in fact generates new vulnerabilities that exacerbate their already precarious situation. (shrink)

What is the basis of our obligations to our animal companions? This is an important question for practical reasons, as the relationship that many individuals have with their animal companion is amongst the most intimate of relationships they share with a non-human animal. It is also important for theoretical reasons. One of those reasons is that our commitments to animal companions may appear to present a kind of puzzle. If we think that we have moral commitments to animal companions that (...) we do not have to other animals, such as livestock or free-roaming animals, what could explain this? I argue that the explanation for this difference in moral commitments is the result of the special relationship we have with our animal companions. More specifically, the basis of our moral commitments to animal companions are like those incurred by parents. Further, it is argued that causing the existence of or voluntarily taking on commitments of care for especially vulnerable and dependent sentient organisms implies robust responsibilities aimed at nurturing and promoting individual flourishing. This conclusion has implications regarding several related moral issues, such as whether animal companions require a moral education, what end-of-life commitments animal companion caregivers have, and whether it is justified to feed our animal companions other animals or let them engage in predation. Further, these issues are of practical interest to animal companion caregivers, law makers, and veterinarians, as well as being of theoretical interest to legal scholars and ethicists. (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)

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)

The diagnostic category of borderline personality disorder (BPD) has come under increasing criticism in recent years. In this paper, we analyze the role and impact of epistemic injustice, specifically testimonial injustice, in relation to the diagnosis of BPD. We first offer a critical sociological and historical account, detailing and expanding a range of arguments that BPD is problematic nosologically. We then turn to explore the epistemic injustices that can result from a BPD diagnosis, showing how they can lead to experiences (...) of testimonial injustice which impede patient engagement in meaning-making activities, thereby undermining standard therapeutic goals. We conclude by showing how our arguments bolster ongoing efforts to replace the diagnostic category of BPD with alternatives such as complex post-traumatic stress disorder. (shrink)

Despite the diversity of ageing, society and academics often describe and label older persons as a vulnerable group. As the term vulnerability is frequently interchangeably used with frailty, dependence, or loss of autonomy, a connection between older age and deficits is promoted. Concerning this, the question arises to what extent it may be helpful to refer to older persons as vulnerable specifically in the context of health care. After analyzing different notions of vulnerability, I argue that it is illegitimate to (...) conclude that older age is related to increased vulnerability. Much more, identifying older adults as a vulnerable group is closely related to ageism and can be associated with paternalistic benevolence and a tendency to overprotection, especially within health care. Additionally, even though older adults are more often in situations of increased vulnerability due to their potentially higher need for health care, I argue further that older adults mainly become a vulnerable group due to ageism. In this way, it can be concluded that the vulnerability of older adults does not originate in certain attributes of the group, but arises from a characteristic of society and, in turn, health personnel, namely ageism. Labeling older adults as vulnerable therefore is only helpful, when it is used to raise awareness of the widespread ageism in society, in this context, especially in the setting of health care, and the negative consequences thereof for older adults. (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)

Obstetric violence – psychological and physical violence by medical staff towards women giving birth – has been described as structural violence, specifically as gender violence. Many women are affected by obstetric violence, with awful consequences. The phenomenon has so far been mainly investigated by the health and social sciences, yet fundamental theoretical and conceptual questions have gone unnoticed. Until now, the phenomenon of obstetric violence has been understood as one impeding autonomy and individual agency and control over the body. In (...) this article I will argue that the phenomenon of obstetric violence occurs in a specific state of embodied vulnerability and that might be destructive for subjectivity since it fails to recognize that state and instead disallows support and demolishes relationships and interdependence. This might introduce a conceptual shift and the phenomenon might be reconceptualized as a moment where vulnerability is misrecognized and ambiguity, relations and support are banned. In this case violence is recognized as cutting the original links to our bodies and the world that constitute our phenomenological condition, instead of as hurting the autonomous subject. Obstetric violence, thus, calls to be reflected upon through de Beauvoir’s ideas on ambiguity, the embodied and situated subject and the subject as essentially construed in relations. I believe that de Beauvoir’s conception of the authentic embodied subject as necessarily ambiguous – immanent and transcendent at the same time and ineludibly linked to the world and its others – will be extremely useful for construing this new understanding of how obstetric violence happens and of what precisely constitutes its damage. (shrink)

Informed consent is medico-legal orthodoxy and the principal means by which research encounters with the body are regulated in the UK. However, biomedical advancements increasingly frustrate the degree to which informed consent can be practiced, whilst introducing ambiguity into its legal significance. What is more, feminist theory fundamentally disrupts the ideologically liberal foundations of informed consent, exposing it as a potentially inadequate mode of bioethical regulation. This paper explores these critiques by reference to a case study—embryo donation to health research, (...) following fertility treatment, as regulated by the HFEA 1990—and contends that informed consent cannot adequately respond to the material realities of this research encounter. Thereafter, by drawing on feminist theories of vulnerability, this paper proffers an alternative bioethical approach, which calls for structural reform in recognition of the fundamentally bilateral constitution of self and society and a renewed appreciation for the affective/dispositional tenor of lived experience. (shrink)

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)

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)

The risks of harm to nonhuman primates, and the absence of benefits for them, are critically important to decisions about nonhuman primate research. Current guidelines for review and practice tend to be permissive for nonhuman primate research as long as minimal welfare requirements are fulfilled and human medical advances are anticipated. This situation is substantially different from human research, in which risks of harms to the individual subject are typically reduced to the extent feasible. A risk threshold is needed for (...) the justification of research on nonhuman primates, comparable to the way risk thresholds are set for vulnerable human subjects who cannot provide informed consent. Much of the laboratory research conducted today has inadequate standards, leading to common physical, psychological, and social harms. (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)

In this paper, following the taxonomy developed by Mackenzie, Rogers and Dodds of different sources and states of vulnerability, I claim that wild animals are inherently and situationally vulnerable. This is because they can experience suffering as a response to certain internal and external states and have a high exposure to, and a low capacity to cope with, harmful natural processes. From this it follows that we have a moral obligation to support and assist individuals who are occurrently vulnerable and (...) to reduce the risk of dispositional vulnerabilities becoming occurrent in the future, by endorsing some form of what I call ‘environmental enhancement’. Finally, I pay critical attention to how to prevent interventions aimed at ameliorating vulnerability from paradoxically generating pathogenic vulnerabilities. (shrink)

Background Research is crucial to improve treatment, survival and quality of life for children with cancer. However, recruitment of children for research raises ethical challenges. The aim of this study was to explore and describe ethical values and challenges related to the recruitment of children with cancer for research, from the perspectives and experiences of healthcare professionals in the Swedish context. Another aim was to explore their perceptions of research ethics competence in recruiting children for research. Methods An explorative qualitative (...) study using semi-structured interviews with key informants. Seven physicians and ten nurses were interviewed. Interviews were analysed using inductive qualitative content analysis. Results The respondents’ ethical challenges and values in recruitment mainly concerned establishing relationships and trust, meeting informational needs, acknowledging vulnerability, and balancing roles and interests. Ensuring ethical competence was raised as important, and interpersonal and communicative skills were highlighted. Conclusion This study provides empirical insight into recruitment of children with cancer, from the perspectives of healthcare professionals. It also contributes to the understanding of recruitment as a relational process, where aspects of vulnerability, trust and relationship building are important, alongside meeting informational needs. The results provide knowledge on the complexities raised by paediatric research and underpin the importance of building research ethics competence to ensure that the rights and interests of children with cancer are protected in research. (shrink)

BackgroundVulnerability is a key concept in traditional and contemporary bioethics. In the philosophical literature, vulnerability is understood not only to be an ontological condition of humanity, but also to be a consequence of contingent factors. Within bioethics debates, vulnerable populations are defined in relation to compromised capacity to consent, increased susceptibility to harm, and/or exploitation. Although vulnerability has historically been associated with older adults, to date, no comprehensive or systematic work exists on the meaning of their vulnerability. To fill this (...) gap, we analysed the literature on aged care for the meaning, foundations, and uses of vulnerability as an ethical concept.MethodsUsing PRISMA guidelines, we conducted a systematic review of argument-based ethics literature in four major databases: PubMed, Embase®, Web of Science™, and Philosopher’s Index. These covered biomedical, philosophy, bioethical, and anthropological literature. Titles, abstracts, and full texts of identified papers were screened for relevance. The snowball technique and citation tracking were used to identify relevant publications. Data analysis and synthesis followed the preparatory steps of the coding process detailed in the QUAGOL methodology.ResultsThirty-eight publications met our criteria and were included. Publication dates ranged from 1984 to 2020, with 17 publications appearing between 2015 and 2020. Publications originated from all five major continents, as indicated by the affiliation of the first author. Our analyses revealed that the concept of vulnerability could be distinguished in terms of basic human and situational vulnerability. Six dimensions of older adults’ vulnerability were identified: physical; psychological; relational/interpersonal; moral; sociocultural, political, and economic; and existential/spiritual. This analysis suggested three ways to relate to older adults’ vulnerability: understanding older adults’ vulnerability, taking care of vulnerable older adults, and intervening through socio-political-economic measures.ConclusionsThe way in which vulnerability was conceptualised in the included publications overlaps with distinctions used within contemporary bioethics literature. Dimensions of aged care vulnerability map onto defining features of humans, giving weight to the claim that vulnerability represents an inherent characteristic of humans. Vulnerability is mostly a value-laden concept, endowed with positive and negative connotations. Most publications focused on and promoted aged care, strengthening the idea that care is a defining practice of being human. (shrink)

Pluralism and diversity are largely bound to a humancentric conception of difference, one which fails to consider the plurality of ontologies that constitute reality. The result has been the confinement of the subject of justice to social spaces, and hence the reinforcement of the dichotomous understanding of humanity and nature. This is in part because pluralist theories are largely concerned with one single manifestation of vulnerability: the vulnerability of minority groups. This essay begins by offering a distinctive definition of vulnerability, (...) one that is broad enough to incorporate both universal and dispositional accounts, while being narrow enough to rule out both vitalist and biocentric approaches. I use the notion to examine debates on political pluralism, and I argue that, as they currently stand, pluralist approaches are ill suited for understanding the struggles of Indigenous peoples against colonialism. I defend the view that the normative case for pluralism needs to be grounded in an ecologically aware ethics that can respond to the vulnerability of animate beings who sustain life. (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)

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)

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)

Traditional accounts of vulnerability tend to label entire populations as vulnerable. This approach is of limited utility. Instead, this article utilizes a layered approach to vulnerability, identifying multiple vulnerabilities that older people experience. It focuses on distinguishing the different layers of vulnerability that may be experienced by the elderly in middle-income countries of Latin America. In doing so, I show how the layered approach to vulnerability functions, and demonstrate why it is more interesting and useful than the traditional approach. The (...) article achieves three things. First, it unwraps the different potential layers of vulnerability that develop in old age and the multidimensionality aspects of aging. Second, it reestablishes the usefulness of the concept of vulnerability and explains its functioning. Finally, it shows how different policies can be designed in order to address each vulnerability layer. The layered account promotes a multifaceted approach to public policy analyses and design. In this sense, the layered concept of vulnerability is an appealing concept to consider in public health ethics. (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)

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)

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)

Debates about effective responses to the COVID-19 pandemic have emphasized the paramount importance of digital tracing technology in suppressing the disease. So far, discussions about the ethics of this technology have focused on privacy concerns, efficacy, and uptake. However, important issues regarding power imbalances and vulnerability also warrant attention. As demonstrated in other forms of digital surveillance, vulnerable subpopulations pay a higher price for surveillance measures. There is reason to worry that some types of COVID-19 technology might lead to the (...) employment of disproportionate profiling, policing, and criminalization of marginalized groups. It is, thus, of crucial importance to interrogate vulnerability in COVID-19 apps and ensure that the development, implementation, and data use of this surveillance technology avoids exacerbating vulnerability and the risk of harm to surveilled subpopulations, while maintaining the benefits of data collection across the whole population. This paper outlines the major challenges and a set of values that should be taken into account when implementing disease surveillance technology in the pandemic response. (shrink)

Phenomenological interviews with queer women in rural Nova Scotia reveal significant forms of trauma experienced during labour and birth. Situating the accounts of participants within both phenomenological and intersectional analyses reveals harms enabled by structurally embedded heteronormative and homophobic healthcare practices and policies. Our account illustrates the breadth and depth of harm experienced and outlines how these violate core ethical principles and values in healthcare.

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)

Placebo-controlled surgical trials can provide important information about the efficacy of surgical interventions. However, they are ethically contentious as placebo surgery entails the risk of harms to recipients, such as pain, scarring or anaesthetic misadventure. This has led to claims that placebo-controlled surgical trials are inherently unethical. On the other hand, without placebo-controlled surgical trials, it may be impossible to know whether an apparent benefit from surgery is due to the intervention itself or to the placebo effect.

In the Netherlands, the legalization of assisted suicide for persons with a death wish without severe illness, often referred to as persons with “completed life” or “tiredness of life,” is intensel...