Smajdor addresses the problem of inferior clinical outcomes among adults with impairments of capacity to give informed consent (AWIC). She notes that AWIC are generally excluded from clinical trials to protect them against harms and avoid exploitation and claims there is a causal link between involvement in clinical trials and favourable outcomes. She argues, given this link, that we should increase AWIC representation in clinical trials and can justifiably do so by recognising the capacity of AWIC to assent. AWIC form (...) a diverse group, with multiple aetiologies, including, for example, Down syndrome, traumatic brain injury and dementia. In some cases, the inability to consent may fluctuate so that the same person could be AWIC only at certain times. Yet despite these differences, the group has a shared unmet need. We agree with Smajdor that AWIC outcomes should be improved, but question whether simply increasing representation in clinical trials is sufficient to achieve this. We identify the following points: 1. AWIC are under-represented in clinical trials. There is evidence of widespread exclusion of AWIC in clinical trials within the UK and abroad and it is often a specific exclusion criterion.1 2. AWIC have worse clinical outcomes and a lower life expectancy. The life expectancy …. (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)

Conceptualisations of vulnerability of research participants in the international standards of ethics of research involving humans underwent a shift from a group-membership (categorical) to an individual-oriented (analytic) approach to vulnerability. However, the categorical view has not been jettisoned completely, and so its role needs to be examined or explained. It is argued in this chapter that a restricted use of the categorical approach can be justified if protection of vulnerable research participants is seen against the background of the dynamics (...) of study design, review and implementation, and if recognition and protection of participants with vulnerabilities is construed as a process in which researchers and ethics review bodies are involved rather than as a labelling device. From this perspective, the suitability of approach to conceptualisation of vulnerability depends on the kind and scope of the available information on participants. The process of study design, ethics review, and implementation involves different users of the ethics standards at different stages in the lifetime of a project: researchers and members of ethics review bodies. The concepts of individual vulnerability (in the analytic approach) and that of group-membership vulnerability (in the categorical approach) can play their protective roles complementarily in the process of identification of vulnerabilities of participants and protection of participants with vulnerabilities. (shrink)

The effective collection and management of personal data of rapidly migrating populations is important for ensuring adequate healthcare and monitoring of a displaced peoples’ health status. With developments in ICT data sharing capabilities, electronic personal health records (ePHRs) are increasingly replacing less transportable paper records. ePHRs offer further advantages of improving accuracy and completeness of information and seem tailored for rapidly displaced and mobile populations. Various emerging initiatives in Europe are seeking to develop migrant‐centric ePHR responses. This paper highlights their (...) importance and benefits, but also identifies a number of significant ethical, legal and social issues (ELSI) and challenges to their design and implementation, regarding (1) the kind of information that should be stored, (2) who should have access to information, and (3) potential misuse of information. These challenges need to be urgently addressed to make possible the beneficial use of ePHRs for vulnerable migrants in Europe. (shrink)

In the past decade UNESCO has pursued a leadership role in the articulation of general principles for bioethics, as well as an extensive campaign to promulgate these principles globally.1 Since UNESCO's General Conference adopted the Universal Declaration on Bioethics and Human Rights in 2005, UNESCO's Bioethics Section has worked with member states to develop a "bioethics infrastructure." UNESCO also provides an "Ethics Teacher Training Course" to member states and disseminates a "core curriculum," primarily targeting medical students. The core curriculum orients (...) itself by the Universal Declaration on Bioethics and Human Rights and aims to articulate a set of "bioethical principles" that provide a "common global . (shrink)

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

Bullying often results in negative coping in victims, including an increased consumption of alcohol. Recently, however, an increase in alcohol use has also been reported among perpetrators of bullying. The factors triggering this pattern are still unclear. We investigated the role of empathy in the interaction between bullying and alcohol use in an adolescent sample (IMAGEN) at age 13.97 (±0.53) years (baseline (BL), N = 2165, 50.9% female) and age 16.51 (±0.61) years (follow-up 1 (FU1), N = 1185, 54.9% female). (...) General empathic distress served as a significant moderator of alcohol use in perpetrators (F9, 493 = 17.978, p < 0.01), which was specific for males and FU1. Male perpetrators, who are generally less sensitive to distress, might thus be more vulnerable to alcohol abuse. (shrink)

This volume breaks new ground by investigating the ethics of vulnerability. Drawing on various ethical traditions, the contributors explore the nature of vulnerability, the responsibilities owed to the vulnerable, and by whom.

Vulnerability is an important concern of moral philosophy, political philosophy and many discussions in applied ethics. Yet the concept itself—what it is and why it is morally salient—is under-theorized. _Vulnerability, Autonomy, and Applied Ethics _brings together theorists working on conceptualizing vulnerability as an action-guiding principle in these discussions, as well as bioethicists, medical ethicists and public policy theorists working on instances of vulnerability in specific contexts. This volume offers new and innovative work by Joel Anderson, Carla Bagnoli, Samia Hurst, Catriona (...) Mackenzie and Christine Straehle, who together provide a discussion of the concept of vulnerability from the perspective of individual autonomy. The exchanges among authors will help show the heuristic value of vulnerability that is being developed in the context of liberal political theory and moral philosophy. The book also illustrates how applying the concept of vulnerability to some of the most pressing moral questions in applied ethics can assist us in making moral judgments. This highly innovative and interdisciplinary approach will help those grappling with questions of vulnerability in medical ethics—both theorists and practitioners—by providing principles along which to decide hard cases. (shrink)

This paper explores the role of existential vulnerability in the experience of personal identity and how identity is found and created. Existential vulnerabilities mark a boundary between what humans can bring about willfully or manipulate to their advantage and what is resistant to such actions. These vulnerabilities have their origin, on an ontological level, in fundamental conditions of human existence. At the same time, they have implications on a psychological level when it comes to self-experience and identity formation. Narrative and (...) value-based identity depend on how a person relates to finitude and the ambiguous side of lived experience. Relational identity depends on how a person relates to existential aloneness and the fact that the meaning and value of our actions are partly out of our control; they are always also dependent on other people’s responses to us. Bodily identity makes us feel continuous and real, but at the same time vulnerable to death and the gaze and actions of others. Being ‘thrown’ into an arbitrary life context is also a form of existential vulnerability. Authentic psychological identities can develop by giving meaning to these circumstances and balancing acceptance of existential vulnerability with the courage to make choices and act. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 14.4 (2004) 411-425 [Access article in PDF] Vulnerability, Vulnerable Populations, and Policy Mary C. Ruof "Special justification is required for inviting vulnerable individuals to serve as research subjects and, if they are selected, the means of protecting their rights and welfare must be strictly applied."Guideline 13: Research Involving Vulnerable Persons International Ethical Guidelines for Biomedical Research Involving Human Subjects Council (...) for International Organizations of Medical Sciences (CIOMS) and World Health Organization (WHO) Geneva, Switzerland, 2002 Within medical research and healthcare certain groups are afforded special protections and services because of their designation as vulnerable. The vulnerable require special justification to participate in human subject research in order to eliminate potential human rights abuses. The Nuremberg Code of 1947 was written in response to the extreme human subject abuses that occurred under the Nazi regime, and, although the intent of the 1947 Code was to protect human rights, rigid voluntary consent requirements deprived some individuals of the right to participate in clinical trials. Recent human research guidelines, such as the CIOMS/WHO guidelines referenced above and the guidelines referenced in Section V of this Scope Note, attempt to balance both protection from abuse in research and access to new, experimental treatments for the vulnerable.Although various protective guidelines stipulate special protections for vulnerable populations, the concept of vulnerability and consequently the criteria designating vulnerable populations remain vague. Precisely who are the vulnerable? The word "vulnerability" stems from the Latin vulnerare, "to wound." (Oxford Encyclopedic English Dictionary 1995). In clinical research, the term [End Page 411] vulnerable generally is applied to individuals who are unable to give informed consent or who are susceptible to coercion. The Common Rule (45 CFR 46, Subpart A) includes as vulnerable research subjects: children, prisoners, pregnant women, and persons who are handicapped, mentally disabled, economically disadvantaged, or educationally disadvantaged. Although the Common Rule specifies certain vulnerable categories, the guidelines were not intended to be exclusive, leaving open the interpretation of vulnerability.In medical research and health policy, vulnerability is an abstract concept that has concrete effects both for those labeled vulnerable and for those not. Clinical researchers, healthcare workers, ethical reviewers, and policymakers must be able to identify vulnerable subjects to establish how healthcare resources will be allocated and who will qualify for special protections and socialized benefits. Attempts to quantify vulnerability in clear, measurable ways have met little if any consensus. As Alexander Morawa (II, 2003, p. 150) states, "There is no single approach to definition of vulnerability. In fact, there is no purposeful categorisation at all."Difficulties in defining vulnerability have prompted discourse surrounding its utility as a qualifying factor in the allocation of health resources and its appropriateness as a guiding principle in bioethics. Some of the authors cited in this Scope Note argue against the labeling and categorization of vulnerable individuals and populations. "Labeling individuals as 'vulnerable' risks viewing vulnerable individuals as 'others' worthy of pity, a view rarely appreciated" (III, Danis and Patrick 2002, p. 320). The categories of vulnerable groups listed under the Common Rule have been the source of controversy, "for example, many find the suggestion that pregnant women are vulnerable to be quite sexist" (IV, DeBruin 2001, p. 7). Instead of creating categories of vulnerable populations, would it not be better to derive an account of just treatment from a just social policy at large that encompasses human vulnerabilities (II, Brock 2002, p. 283).For some of the authors listed here, the concept of vulnerability is essential to bioethics. Robert Goodin (I, 1985, p. 107) writes that the vulnerability of other human beings is the source of our special responsibilities to them. In contrast to the four American principles of biomedical ethics—autonomy, nonmaleficence, beneficence, and justice—the four principles of European bioethics and biolaw include vulnerability along with autonomy, dignity, and integrity. According to, Jacob Dahl Rendtorff and Peter Kemp (I, 2000, p. 274) "the principle of vulnerability is ontologically prior to the other [European] principles, it expresses better than all of the other ethical principles... the finitude of the human condition."Some of the... (shrink)

The challenge of orphans and vulnerable children has become central to the response of many organisations today. The number of OVC throughout northern Nigeria is growing as a result of the Boko Haram pandemic. Mostly, this is caused by the death of parents who have been killed by the insurgents. It has been estimated that by 2015, 200 000 children under the age of 18 had been orphaned by the Boko Haram insurgents. As the number of OVC is growing, (...) it is becoming more and more difficult for their communities to address all their needs, including their need for positive role models and mentors. This article discusses the role that mentoring can play in the development of OVC affected by violence in northern Nigeria, specifically those in internally displaced person camps. This article argued that one approach to improve the holistic care of OVC in IDP camps in northern Nigeria is through the use of mentors. (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)

The article addresses issues at the nexus of physician industrial action, moral agency, and responsibility. There are situations in which we find ourselves best placed to offer aid to those who may be in vulnerable positions, a behavior that is consistent with our everyday moral intuitions. In both our interpersonal relationships and social life, we make frequent judgments about whether to praise or blame someone for their actions when we determine that they should have acted to help a (...) class='Hi'>vulnerable person. While the average person is unlikely to confront these kinds of situations often, those in the medical professions, physicians especially, may confront these and similar situations regularly. Therefore, when physicians withhold their services for whatever reason in support of industrial action, it raises issues of moral responsibility to patients who may be in a vulnerable position. Using theories of moral responsibility, vulnerability, and ethics, this paper explores the moral implications of physician industrial action. We explore issues of vulnerability of patients, as well as the moral responsibility and moral agency of doctors to patients. Determining when a person is vulnerable, and when an individual becomes a moral agent, worthy of praise or blame for an act or non-action, is at the core of the framework. Notwithstanding the right of physicians to act in their self-interest, we argue that vulnerability leads to moral obligations, that physicians are moral agents, and the imperatives of their obligations to patients clear, even if limited by certain conditions. We suggest that both doctors and governments have a collective responsibility to prevent harm to patients and present the theoretical and practical implications of the paper. (shrink)

Philosophical theorizing about global justice has evolved into a flourishing, sophisticated, and respectable field. This was not the case about two decades ago and O’Neill’s pioneering work on these topics has been highly influential in these welcome developments. In this paper I aim to review the important role agency, need, and vulnerability play in O’Neill’s normative theorizing, as well as the importance she places on being able to allocate responsibilities, in evaluating how porous borders should be to persons who (...) want to cross them permanently. Some of the most important questions needing resolution in political philosophy today include how to distribute responsibilities for moving towards global justice. Just how difficult this is will soon become obvious. I discuss a case study which helpfully illustrates some of the complexity. It also provides an interesting challenge for O’Neill’s work. As I show, focusing on vulnerabilities gives us a richer understanding of the nature of our ethical and political obligations in a world characterized by multiple injustices. But it also adds more challenges in our quest to assign responsibility fairly. (shrink)

Open access. This open-access book discusses vulnerability and the protection-inclusion dilemma of including those who suffer from serious poverty, severe stigma, and structural violence in research. Co-written with representatives from indigenous peoples in South Africa and sex workers in Nairobi, the authors come down firmly on the side of inclusion. In the spirit of leaving no one behind in research, the team experimented with data collection methods that prioritize research participant needs over researcher needs. This involved foregoing the collection of (...) personal data and community researchers being involved in all stages of the research. In the process, the term ‘vulnerability’ was illuminated across significant language barriers as it was defined by indigenous peoples and sex workers themselves. The book describes a potential alternative to exclusion from research that moves away from traditional research methods. By ensuring that the research is led by vulnerable groups for vulnerable groups, it offers an approach that fosters trust and collaboration with benefits for the community researchers, the wider community as well as research academics. Those living in low-income settings, in dire situations that are summarized with the term ‘vulnerability’ know best what their problems are and which priorities they have. To exclude them from research for their own protection is a patronizing approach which insinuates that researchers and research ethics committees know best. The team from this book have shown that minimally risky and minimally burdensome research tailored towards the needs of highly marginalized and stigmatized communities can be scientifically valuable as well as inclusive and equitable. I congratulate them. Prof. Klaus Leisinger, President Global Values Alliance, Former personal advisor to Kofi Annan on corporate responsibility. (shrink)

This paper argues that while regulatory frameworks in aged care authorise restraints to protect vulnerable persons living with dementia from harm, they also serve as normalising practices to control challenging monstrous Others. This argument emerges out of an observed unease in aged care discourse where older people living with dementia are described as ‘vulnerable’, while dementia behaviours are described as ‘challenging’. Using narrative analysis on a case study from the Final Report of the Australian Royal Commission into (...) Aged Care Quality and Safety (RCAC), this paper investigates how the RCAC (re)produced constructions of persons with dementia as ‘vulnerable monsters’. Drawing upon monstrous theory about ‘unruly and leaky’ bodies, extracts from the case study reveal how the RCAC repeated and reinforced monstrous constructions of dementia. Dementia behaviours, particularly ‘wandering’, were constructed through a dehumanising crisis frame that produced ‘challenging’ bodies and legitimised ‘last resort’ normalising practices, such as physical and chemical restraints. In failing to resist monstrous constructions of dementia behaviours, the RCAC accepted and authorised a regime of scaled responses leading to restrictive practices for control of challenging bodies in aged care. Although dementia care and restrictive practices received substantial attention in the RCAC, this paper reveals a missed opportunity for deeper review of institutionalised use of restraints that has relevance for ongoing reform of Australian aged care following conclusion of the RCAC. (shrink)

How can social institutions complicate and worsen vulnerabilities of particular individuals or groups? We begin by explicating how certain diagnoses within mental health and medicine operate as interactive kinds of labels and how such labels can create institutional barriers that hinder one's capacity to achieve wellbeing. Interactive-kind modeling is a conceptual tool that elucidates the ways in which labeling can signal to others how the labeled person ought to be treated, how such labeling comes about and is perceived, and how (...) it compounds vulnerabilities. We argue that this shift in standpoint helps us recognize and mitigate compounded vulnerabilities. (shrink)

Through the centuries, women from all over the world remain vulnerable to their social status. In some developed countries the situation has improved, but there are many countries where it is still unbearable. United Nations Educational, Scientific and Cultural Organization aims to assist in this regard by addressing ethical issues pertaining to medicine, life sciences and related technologies as applied to human beings with consideration of women's social, legal and environmental dimensions. Yet pastoral counsellors on ground level are confronted (...) with the need for assistance to women who suffer because of this exploitation. Therefore, the aim of this article is to focus on biblical principles that can serve as anchors to guide women regarding their human vulnerability and personal integrity when they experience suffering and hardship. The challenge facing the pastoral counsellor is to guide women to accept the reality of their situation within a certain framework, to adequately deal with this and, in spite of overwhelming emotions, continue to grow in personal integrity and healing. (shrink)

This article challenges a prominent claim in moral philosophy: that autonomy is a personal ideal, according to which individuals are authors of their own lives. This claim is philosophically dubious and ethically pernicious, having excluded women from positions of rational authority. A reading of Ibsen's A Doll's House illustrates how this conception of the ideal of autonomy misrepresents the reality of individuals' lived experiences and imposes a gendered identity which subordinates women to a masculine narcissism. In Ibsen's play the woman, (...) as a doll confined to home, remains dependent on an autonomous man. It would seem that men in modern philosophy could see only their own image as rational agents reflected in their ethics; but, in fact, this position is self-defeating. The recognition of our contingencies and so, vulnerability, motivated Kant himself to try to make the moral realm secure with something necessarily common to all human beings: our capacity to reason. The unwitting upshot of Kant's ethics has been the restriction of reason to a purely formal function; but this autonomy of reason undermines itself in being unable to guide the writing of the rational agent's own life. I propose instead to preserve the capacities of moral rationality, while urging the incorporation of ethical practices previously devalued by their association with vulnerability, such as attention, affection and relationality. My philosophical challenge is, first, to develop an internal critique of ethics which exposes its authoritative imposition of a gender identity and, next, to propose a revised conception of autonomy, namely, not just writing our own story, but reading the stories in which we find ourselves. (shrink)

Two competing intuitions have dominated the debate over facial tissue transplantation. On one side are those who argue that relieving the suffering of those with severe facial disfigurement justifies the medical risks and possible loss of life associated with this experimental procedure. On the other are those who say that there is little evidence to show that such transplants would have longterm psychological benefits that couldn’t be achieved by other means and that without clear benefits, the risk is simply too (...) great. Ethicists on both sides have called for more analysis of the link between the face and personal identity in order to get a better grasp on potential gains and losses. This paper responds to that call by looking at contemporary philosophical analyses of the relation between organ transplants and personal identity and between the human face, human dignity, and human vulnerability. It is argued that the face matters not because it is the unique marker of our identity, but because of its role in the intersubjective constitution of moral identity and human dignity. (shrink)

The paper outlines an attempt at phenomenological description of two intermingled dimensions of human vulnerability. First, vulnerability understood as an essential dimension in the constitution of embodiment and second, vulnerability in regard to trust, as a form of emotive interpersonal disposition. In either case, vulnerability does not only refer to mere physical fragility but to the situational horizon where from emerge progressive anticipations of “possible harm”. According to this account, vulnerability appears as a practical horizon of emotional awareness of risk (...) involving not only bodily fragility but a dimension of concrete existence of individual persons, namely, the intimate affectation of being harmed, injured or deprived or a practical aim. In this context the paper claims for a second and more radical sense of vulnerability that problematize the classical account of emotive protentionality, following Anthony Steinbock´s description of moral emotions. In this regard, vulnerability of trust involves an emotional risk and fragility that opens to consideration a dimension of human existence revealing human persons in their absolute and individual concreteness. (shrink)

The vulnerability of patients receiving significantly innovative neurosurgical procedures, either as research or as non-standard therapy, presents particularly potent challenges for those attempting to substantially advance clinical Neurosurgical practice in the most ethically and efficacious manner. This beginning formulation has built into it several important notions about research participation, balancing values, and clinical advancement in the context of neurological illness. For the time being, allow vulnerability to act as a placeholder for circumstances or states of being wherein the established checks (...) and balances of power and interest are no longer sufficient in promoting the just treatment of persons. Further, the phrase to substantially advance Neurosurgical practice encompasses radical innovation as well as significant research into new procedures. Finally, few of these explorations involve true randomized placebo controlled trials, but rather they enroll patients rightfully hoping for some benefit by means of undergoing the procedure.When a neurosurgeon asks me, as an ethicist, to meet with a patient who has medically refractory disease and no good standard therapy options remaining, he is asking for help concerning whether to offer, as a last chance, an unproven therapy as either innovation or research. (shrink)

It is rare to find honest accounts of the difficulties and dilemmas encountered when conducting sensitive research with vulnerable research populations. This account explores some of the ethical issues raised by a qualitative interview study with lesbians and gay men about their experiences of nursing care. There is tension between the moral duty to conduct research with vulnerable and stigmatized groups in order to improve care, and the inevitable lack of resources that go with such a venture. This (...) increases the risk of harm during the process of research. The risk of harm to both the researchers and the researched is explored and the need for a support structure for both groups is raised. There is a pressing need to develop further understanding about the ways in which the dissemination of research can potentially harm already vulnerable research populations. (shrink)

How should states respond to the departure of talented individuals from the developing to the developed world--the so-called brain drain? In Debating Brain Drain, Gillian Brock and Michael Blake investigate whether restrictions on emigration can be justified in order to avoid the harmful effects of the brain drain. In this piece, I argue that the question of whether states have the right to limit the exit of their skilled citizens cannot be answered in isolation from the question of what global (...) migration regime is best able to protect vulnerable persons. In particular, I argue that the responsibility to prevent the brain drain lies with recipient states, who are actually required to exclude prospective skilled immigrants when a number of conditions are met. (shrink)

ICTs, personal data, digital rights, the GDPR, data privacy, online security… these terms, and the concepts behind them, are increasingly common in our lives. Some of us may be familiar with them, but others are less aware of the growing role of ICTs and data in our lives - and the potential risks this creates. These risks are even more pronounced for vulnerable groups in society. People can be vulnerable in different, often overlapping, ways, which place them at (...) a disadvantage to the majority of citizens; Table 3 in this guide presents some of the many forms and causes of vulnerability. As a result, vulnerable people need greater support to navigate the digital world, and to ensure that they are able to exercise their rights. This guide explains where such support can be found, and also answers the following questions: - What are the main ethical and legal issues around ICTs for vulnerable citizens? - Who is vulnerable in Europe? - How do issues around ICTs affect vulnerable people in particular? This guide is a resource for members of vulnerable groups, people who work with vulnerable groups, and citizens more broadly. It is also useful for data controllers1 who collect data about vulnerable citizens. While focused on citizens in Europe, it may be of interest to people in other parts of the world. It forms part of the Citizens’ Information Pack produced by the PANELFIT project, and is available in English, French, German, Italian and Spanish. You are welcome to translate this guide into other languages. Please send us a link to online versions in other languages, so that we can add them to the project website. (shrink)

By unpacking some of the dichotomies inherent in the concepts of vulnerability and disability, the article problematises some of the current legal approaches to disability in Finland. It argues that where used to single out population groups or individuals due to their embodied characteristics, the vulnerability paradigm can be seen to create binaries both among the persons with disabilities, and between the “vulnerable” persons with disabilities and the perception of a rational, self-standing and autonomous human being. To (...) mitigate such binaries, the article explores an agency-centred discourse of vulnerability, one that recognises the co-existence of agency and vulnerability and sees agency as dynamic and responsive to the societal support structures that surround all of us. One of the central arguments of the article is that generalised approaches do, however, not suffice to make agency a reality for all persons with disabilities. Given the extensive diversity of intra-group variations between persons with disabilities, individualised solutions are needed for agency to be possible for all. To overcome objectification and de-agencification – and to enhance agency – this diversity of situations, needs and contexts of lived-in realities of individuals also needs to be expressly reflected in the legal language in addressing disability. (shrink)

While many books on ethics contain a chapter discussing prisoners’ rights and the ethical dimensions of research involving incarcerated persons, Vulnerability and Incarceration is the first monograph devoted to the subject. Victor interrogates the concept of vulnerability to examine prisoners’ right to medical research from a novel point of view.

Over the last three quarters of a century, international guidelines and regulations have undergone significant changes in how children are problematised as participants in biomedical research. While early guidelines enacted children as vulnerable subjects with diminished autonomy and in need of special protection, beginning in the early 2000s, international regulatory frameworks defined the paediatric population as vulnerable due to unaddressed public health needs. More recently, ethical recommendations have promoted the active engagement of minors as research partners. In this (...) paper, I adopt a post-structuralist approach to policy analysis to examine deep-seated assumptions and presuppositions underlying the changes in the problematisation of children as biomedical research participants over time. While biomedical research ethics focuses on the autonomy and vulnerability of minors, ethical guidelines are situated in specific sociocultural contexts, shaped, among other things, by contingent public health needs and changing conceptions of the value of research and science for society. In the process, I demonstrate the challenge of moving away from an approach that in taking adults as the model overshadows the complexity of children’s lived experiences as well as their personal, cultural, and social lives. The lack of acknowledgement of this complexity makes children vulnerable to epistemic injustice, which is particularly crucial to address in public involvement initiatives. (shrink)

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

Legislation for dementia care needs to be continually rethought, if the rights of older persons and other persons with dementia are to be addressed properly. We propose a theoretical framework for understanding vulnerability and dependency, which enables us to problematize the currently prevailing legal conception of adults as always able — irrespective of health or age — to act autonomously in their everyday lives. Such an approach gives rise to difficult dilemmas when persons with dementia are forced (...) to make decisions on their own about basic living conditions, such as housing and care, without decision-making support. In Sweden, for example, such matters are frequently left to the person him- or herself to decide, often without any assistance from social workers, and with family members serving as caregivers of last resort.Using vulnerability theory as the framework for our discussion, we argue that policymakers should not apply a group-oriented approach (based on factors like age, legal status, or mental capacity) to persons suffering from dementia. The needs of such individuals are as complex and varied as they themselves are. We discuss our findings from an interdisciplinary (law/social work) research project in which we examine the dilemma that social workers face when they are required, under the terms of the Swedish Social Services Act, to determine whether persons with dementia are to be granted support.We argue further that a cross-disciplinary approach — in which vulnerability theory furnishes the framework — opens up for new ways of understanding and developing social welfare law and practice. This, we believe, can help us better address the rights, interests, and needs of people with dementia, of their families, and of professionals in the social welfare system. Finally, many of the problems faced by ageing societies in general can be understood on the basis of such an approach. (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)

Pamela conceived of vulnerability as a capability to enhance our lives in a continual creative process of transformation. She argued for recreating our perception of vulnerability as positive in our lives and in our relationships. I come to this exploration of transformation both as an academic and as Pamela’s sister, exploring my own lived experience of vulnerability and love as a result of her passing, and seeking to understand how her concept of creative transformation can relate to my personal experiences (...) as well as others’ stories of transformation. Pamela describes that an openness to vulnerability creates a space or a threshold for transformation. This space can be dark and disorienting yet as we move through it we have the freedom to make choices that enhance our personal lives as well as the social and political contexts within which we live and work. In my work that encourages a holistic mind–body–spirit view of health and healing I can see how Pamela’s conception of vulnerability as a capability opens us to a creative response for healing. My exploration of vulnerability and creative transformation reveals that Pamela’s work on vulnerability can be applied to creative transformation broadly and is especially relevant in a world currently torn apart by violence and fear. An openness to vulnerability may help the world to evolve toward love and hope. (shrink)

Psychotic and prodromal states are characterized by distortions of intersubjectivity, and a number of psychopathologists see in the concrete I-You frame of the clinical encounter the manifestation of such impairment. Rümke has coined the term of ‘praecox-feeling’, designated to describe a feeling of unease emanating in the interviewer that reflects the detachment of the patient and the failure of an ‘affective exchange.’ While the reliability of the praecox-feeling as a diagnostic tool has since been established, the explanation and theoretical framing (...) of the phenomena is still lacking. By drawing on enactivist approaches to social cognition, the paper will attempt to provide such an explanation. This is relevant, since such an explanation could contribute to a more precise understanding of the phenomena in question and possibly add to our knowledge regarding the link between experiential vulnerability to psychosis and disturbed I-Thou intersubjectivity. (shrink)

Shame is frequently viewed as a destructive emotion; but it can also be understood in terms of change and growth. This essay highlights the problematic values that cause pervasive and frequent shame and the importance of resisting and changing these values. Using Confucian insights, I situate shame in an interactive process between the individual's values and that of their society, thus, being vulnerable to shame represents both one's connection to a community and an openness to others’ negative feedback. This (...) process provides an important arena where personal values interact with communal ones. The Confucian tradition, I argue, affords individuals a degree of autonomy in internalization through urging them to cultivate and maintain a keen sense of shame. My discussion also offers resources for understanding the various aspects of this interactive process—how individuals with similar experiences of shame may, through channeling their experiences, influence social values and propel moral progress. (shrink)

The U.S. Code of Federal Regulations governing federally funded research on human subjects assumes that harmful research is sometimes morally justifiable because the beneficiaries of that research share a particular vulnerability with its subjects. In this article, I argue against this assumption, which occurs in every subpart of the Code of Federal Regulations that deals with specific vulnerable populations . I argue that shared vulnerability is no exception to the general principle that harming one person in order to benefit (...) another is no more justifiable if the two people have traits in common. Further, shared vulnerability is not a reasonable proxy for any morally relevant desideratum of research, in particular the desire to benefit the worst off, the desire to avoid exploitation, and the desire to use vulnerable populations in research only when necessary. (shrink)

In the literature on medical ethics, it is generally admitted that vulnerable persons or groups deserve special attention, care or protection. One can define vulnerable persons as those having a greater likelihood of being wronged – that is, of being denied adequate satisfaction of certain legitimate claims. The conjunction of these two points entails what we call the Special Protection Thesis. It asserts that persons with a greater likelihood of being denied adequate satisfaction of their (...) legitimate claims deserve special attention, care or protection. Such a thesis remains vague, however, as long as we do not know what legitimate claims are. This article aims at dispelling this vagueness by exploring what claims we have in relation to health care – thus fleshing out a claim-based conception of vulnerability. We argue that the Special Protection Thesis must be enriched as follows: If individual or group X has a greater likelihood of being denied adequate satisfaction of some of their legitimate claims to physical integrity, autonomy, freedom, social provision, impartial quality of government, social bases of self-respect or communal belonging, then X deserves special attention, care or protection. With this improved understanding of vulnerability, vulnerability talk in healthcare ethics can escape vagueness and serve as an adequate basis for practice. (shrink)

Many individuals who have mental disorders often report negative experiences of a distinctively epistemic sort, such as not being listened to, not being taken seriously, or not being considered credible because of their psychiatric conditions. In an attempt to articulate and interpret these reports we present Fricker’s concepts of epistemic injustice (Fricker, 2007, p. 1) and then focus on testimonial injustice and hermeneutic injustice as it applies to individuals with mental disorders. The clinical impact of these concepts on quality of (...) care is discussed. Within the clinical domain, we contrast epistemic injustice with epistemic privilege and authority. We then argue that testimonial and hermeneutic injustices also affect individuals with mental disorders not only when communicating with their caregivers but also in the social context as they attempt to reintegrate into the general society and assume responsibilities as productive citizens. Following the trend of the movement of mental health care to the community, the testimonies of people with mental disorders should not be restricted to issues involving their own personal mental states. (shrink)

We reinvigorate vulnerability theory as a radically ethical device — ethical vulnerability analysis. We bring together fuller vulnerability analysis as theorized by Fineman and Grear in conversation with Levinas and Derrida’s radical vulnerability and the ethics of hospitality to construct a theoretical framework that is firmly anchored in the realities of the everyday that are vulnerability and migration. This novel framework offers a thinking space to subvert approaches to migrants and migration as it compels us to come face-to face with (...) the “other”, which in turn renders the political accountable by her. We deploy ethical vulnerability analysis to deconstruct the EU’s “migration crisis” and investigate whether the activation of temporary protection for displaced persons from Ukraine signifies a humanizing turn in the EU’s asylum and migration policies. In this regard, we submit that this hospitable moment constitutes an “exception to the rule” rather than a paradigm shift. (shrink)

The contemporary emphasis on vulnerability and interdependence stresses the ethical necessity of a critical care concept to undermine the individualistic paradigm of autonomy and the modern understanding of well-being regarding individual self-achievement and world mastery. This paper analyzes how the philosophical investigation of vulnerability has led to an existential, social, and ethical reflection that brought to light a fundamental interdependence among living beings. This chapter examines the nature of this interdependence and the type of relations involved in these dynamics. The (...) author argues that caring for the living involves a holistic approach of the human being that considers not only the plurality of her interpersonal relations but also her relation to the environment and her relation to her ‘self’ as a person with rights and responsibility. Moreover, speaking of interdependence also implies examining the philosophical understanding of our modern concepts of nature and culture along the lines of a philosophical critique of the immunity paradigm and cultural biology anew. Drawing on phenomenological ethics, this chapter shows that the concept of responsibility that stems from this renewed understanding of interdependence implies an ethics based on responsiveness and responsibility that articulates the dignity of human beings as persons with the care for the living they demonstrate in the ‘forms of life’ they inhabit with others. It bears consequences for contemporary issues in bioethics, such as caring for vulnerable people or determining the moral standing of our relations. (shrink)

In this essay I present an overview of the problem of climate change, with attention to issues of interest to feminists, such as the differential responsibilities of nations and the disproportionate “vulnerabilities” of females, people of color, and the economically disadvantaged in relation to climate change. I agree with others that justice requires governments, corporations, and individuals to take full responsibility for histories of pollution, and for present and future greenhouse gas emissions. Nonetheless I worry that an overemphasis on household (...) and personal-sphere fossil fuel emissions distracts from attention to higher-level corporate and governmental responsibilities for addressing the problem of climate change. I argue that more attention should be placed on the higher-level responsibilities of corporations and governments, and I discuss how individuals might more effectively take responsibility for addressing global climate change, especially when corporations and governments refuse to do so. (shrink)