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)

In the era of the “silent revolution” of an unstoppable aging of the world’s population, there is a question regarding the appropriateness and desirability of establishing a legal category called “elderly individuals” to address the gradual decline in physical and mental abilities associated with aging. This essay explores the potential designation of older people as an independent category under the law, considering that linking changes in their socio-legal status solely to the passage of time has been viewed as a form (...) of “subjective discrimination” by civil law scholars so far. While labor and social welfare laws have long recognized the “special status” of elderly individuals, and the EU has increasingly referred to them in recent consumer-focused legislation, the prevailing view in Italian civil doctrine opposes the creation of an “old subject” category, arguing that vulnerability cannot be considered an intrinsic and defining characteristic solely based on age. Notwithstanding that, the essay suggests that creating a group or category for vulnerable (elderly) individuals could have several advantages, including recognizing their rights, assigning obligations, implementing tailored procedures, and providing forms of protection. Moreover, it would offer an opportunity to reflect on the importance of empowering individuals and promoting their autonomy in using legal instruments to plan their future. (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)

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)

Background: Vulnerability is an important concept in nursing and nursing ethics. Vulnerability and ageing have generally been associated with frailty, which gives a limited view of both vulnerability and ageing. Objective: The aim of this study was to illuminate the meaning of vulnerability to older persons themselves. Research design: A qualitative design based on interpretive description was adopted. The data were collected by interviews that were analysed by qualitative content analysis as interplay between analysis, interpretation and meaning construction. Participants (...) and research context: In total, 14 older persons aged 70–96 years were interviewed, 2 men and 12 women. Some of the participants lived in their own homes, some in service houses and some in nursing homes. Ethical considerations: The ethical principles of informed consent, confidentiality and non-identification were respected. Findings: The core meaning was a deeper sense of vulnerability as you grow old. This was expressed in six themes: Being easily harmed, Becoming an old person, Being an old person in society, Reactions when being violated and hurt, Protection and Vulnerability as strength. Discussion and conclusion: The themes include frailty and threats to the dignity of older persons and also capacity to feel and develop. The results showed that although the frailty perspective dominated, vulnerability also had positive meanings for the older persons. (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)

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)

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.

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 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)

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)

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)

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)

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)

In this personal tribute to Pamela Sue Anderson, based on many conversations, I try out the idea that she was seeking to locate an underlying metaphysical and ethical unity that makes our human vulnerability, love and reflective self-understanding both possible and intelligible. I trace this unity in Pamela’s philosophical imaginary to resonances or retrievals from three philosophers who featured in her “internal dialogues”: Spinoza, Kant and Levinas. I also allude to the great influence on Pamela and myself of our mutual (...) friend Adrian Moore. My thought is that Pamela was pursuing something fundamental about our humanity as open, creative, fluid and risky becoming rather than being. I suggest that she found kinship with Spinoza’s thinking of vulnerability and love together and his vision of underlying unities to make sense of ourselves. In Kant’s First Critique, I suggest that she found a unified deduction of the possibility of objectivity and subjectivity and that she also traced in his moral philosophy the richer conception of ourselves offered by the “humanity” version of the categorical imperative and by the joint origin of the objectivity of the moral law and the subjectivity of our moral agency. These resources made room for human vulnerability, self-love and the love of others within the scope of the Kantian project. Of the three philosophers, Levinas was closest to Pamela’s perception of vulnerability and love and her conception of gendered human selves living lives of complex becoming rather than of being. His fusion of morality and metaphysics and the unity of his post-phenomenological deduction of subjectivity and saying bring into focus the influences I discern. (shrink)

The Living Organ Donor as Patient: Theory and Practice, by Lainie Friedman Ross and J. Richard Thistlethwaite, Jr. (Oxford University Press, 2021), offers a stimulating opportunity to consider the ethics of living solid organ donation in more depth. Ross and Thistlethwaite detail a framework of five principles—respect for persons, beneficence, justice, vulnerability, and responsibility—that positions prospective living donors as patients. The authors engage readers by applying these principles across a series of examples, issues, and possibilities, the “practice.” Readers may (...) wish to reflect further on the framework's implications, including those related to vulnerability, power, and social justice (to name a few), particularly as these relate to the “theory” of this book. The book is well worth the read for clinicians, ethicists, and others involved in organ donation and transplantation. (shrink)

Should incarcerated persons be able to participate in medical research? While this is a much-debated question, Elizabeth Victor offers a fresh perspective on current regulatory approaches to research with prisoners. She delivers exactly what her book title promises: a reevaluation of protective frameworks based on her adaptation of the concept of vulnerability.Victor employs a definition of vulnerability that is “dynamic, capturing the particularities of an individual’s situation within a community of practices, norms, and a specific history”. However, she also (...) emphasizes that “by reinforcing vulnerability in populations, these practices create, sustain, or reinforce asymmetric power relations”, which... (shrink)

The philosophic notion of human vulnerability cannot be pinpointed as such in the corpus of classic philosophy. Nevertheless, death and suffering as essential philosophical and theological problems make reference to the dimension of vulnerability inherent to the human condition. Since times immemorial, the fear of death, the avoidance of suffering, or the crisis situations of human existence have laid at the basis of philosophical and religious systems. According to Freud, in the futile pursuit of happiness humans often face misery, which (...) stems from a suffering that threatens them from three different directions: their own body, the outside world, and the relationships with other people. Starting from this angle, the present article furthers the notion of vulnerability by identifying its archetypal themes in relation to human life and its conditions of existence. Two main concepts will guide this study of human vulnerability: a vulnerability inherent to human subjectivity, and one consubstantial to the process of human socialisation. For Levinas, vulnerability has become alike an obsession for others, a full responsibility, which leads to the following formula: it is only a vulnerable person who can love one’s neighbour. In accordance with Habermas, the manner in which a human being leaves natural law and accesses social justice is here re-examined, as it stands for a vulnerability structurally determined by the forms of socio-cultural life. (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)

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)

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)

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)

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)

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)

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

In 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)

The Power of Belonging unpacks the universal longing to belong and the shame that keeps leaders from leading with authenticity, confidence, and hope.

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 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)

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)

Robert Castel is an eminent figure in the social sciences because of his innovative contributions to various social and health fields. The seminal work of this poststructuralist author and social activist has influenced several research disciplines, but has not yet had a significant impact on nursing. In this article, we will present the thinking of this man, who considered himself a sociologist, philosopher and “historian of the present.” We will examine the most important issues he explored during his career, including (...) the psychiatric apparatus, the management of risk and the social vulnerability. We believe that this thinker's perspective on diverse social issues is very relevant to nursing practice and research and to the health sciences in general. The concepts he developed and utilized with finesse provide us with a critical reading of many contemporary health issues, particularly in mental health and psychiatric nursing. Castel's critical and engaged approach incites mobilization for social justice and greater protections for marginalized and vulnerable persons. These principles of advocacy and social justice are also at the heart of the nursing profession. (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)

Does the fact that humans are vulnerable, needy and dependent beings play an important role in Kantian ethics? It is sometimes claimed that it cannot and does not. I argue that it can and does. I distinguish between broad (all persons are vulnerable) and narrow (only some persons are vulnerable) senses of vulnerability, and explain the role of vulnerability in both senses in Kantian ethics. The basis of this argument is to show that the core (...) normative focus of Kantian ethics is on the dignity that human beings have in virtue of their capacity for rational agency. This implies that the empirical conditions under which human beings can acquire, sustain, exercise, and develop their rational capacities are of core moral importance in Kantian ethics. This explains why human vulnerabilities, including the vulnerability of human bodies, are important in Kantian ethics, since rational capacities in human agents (and the bodies those rational capacities depend upon) are highly vulnerable in all persons (vulnerability in the broad sense) and especially vulnerable in some sub-groups of persons (vulnerability in the narrow sense). (shrink)

Who is the human being? A powerful, enhanceable biological organism, which techniques and artifacts can augment or a disembodied spirit damned to be influenced by its fragile body? In Defense of the Human Being accounts for both perspectives existing in the contemporary debate on the human and provides us with an answer: we should conceive of “ … the human person as a physical or embodied being, as a free, self- determining being, and ultimately as an essentially social being connected (...) with others.” (p. 2). Temporality, embodiment, relationality, vulnerability: we need to take into account these features and embrace them, even though this means to accept that we cannot live forever, we cannot rely on machines only, but we have to fulfil our existence. (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 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)

The concept of vulnerability has been the topic of considerable discussion in research bioethics, largely because of dissatisfaction with early constructions of the concept that were based on subpopulations of research subjects. These subpopulations have attributes likely to undermine their capacity to provide autonomous informed consent: persons who are relatively or absolutely incapable of protecting their own interests through negotiations for informed consent. Several subpopulations were seen as requiring special protections, including children, pregnant women, prisoners, racial minorities, the economically (...) disadvantaged, the very sick, and the institutionalized. Recent years have witnessed the identification of other subpopulations with attributes that could render them vulnerable, as well. For example, the Council for the International Organization of Medical Societies has named such potentially vulnerable groups as the homeless, nursing home residents, patients with incurable diseases, patients in the emergency department, employees, students, and members of communities who are unfamiliar with modern medicine. (shrink)

The vulnerability of participants in Substance Abuse and Mental Health Services Administration (SAMHSA) programs is a consequence of the illnesses that they are experiencing; ethical guarantees must be in place that ensure the dignity of the persons involved in such programs. Dignity is more than an individual concern; it has individual, institutional, and societal dimensions. An ethical framework is proposed that involves the interrelated vulnerabilities and needs of individuals and communities and our societal response to them. Among the issues (...) given particular attention are individual and community stigmatization, target population involvement in program planning, balance with regard to confidentiality and privacy, the place of proportionality grounded in a rich sense of community as a guiding ethical principle, and guidelines for SAMHSA programs. (shrink)

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)

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)

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)

It is not unusual for the adjective ‘vulnerable’ to be applied to those in receipt of nursing practice without making clear what it is that persons thus described are actually vulnerable to. In this paper I argue that the way nursing has adopted the idea of vulnerability tends to imply that some people are in some way invulnerable. This is conceptually unsustainable and renders the idea of the vulnerable patient meaningless. The paper explores the meaning of (...) vulnerability both in general terms and in the context of nursing practice. It is argued that to be in receipt of nursing is to become, to a greater or lesser extent, more‐than‐ordinary vulnerable. Thus all patients are more‐than‐ordinarily vulnerable and this restricts their potential to flourish. Nurses are well placed to contribute to the flourishing of more‐than‐ordinarily vulnerable persons and my substantive claim is that this ‘protective’ function is indeed a legitimate and fundamental part of the role of nurses. (shrink)

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

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.