The so-called European principles of bioethicsare a welcome enrichment of principlistbioethics. Nevertheless, vulnerability, dignityand integrity can perhaps be moreaccurately understood as anthropologicaldescriptions of the human condition. Theymay inspire a normative language, but they donot contain it primarily lest a naturalisticfallacy be committed. These anthropologicalfeatures strongly suggest the need todevelop deontic arguments in support of theprotection such essential attributes ofhumanity require. Protection is to beuniversalized, since all human beings sharevulnerability, integrity and dignity, thusfundamenting a mandate requiring justice andrespect for fundamental human (...) rights.Being a feature of all humanity, vulnerabilityis improperly extended to designatedestitute individuals and populations. Rather,they are in a state of fallen vulnerability,for they already are harmed in some way, andhave become deprived of their range ofcapabilities. These individuals are destituteand are no longer in command of theirfundamental human rights. They have lost thestatus of unharmed vulnerability;identifying them as susceptible – vulnerated andno longer only vulnerable – stresses thepoint that bioethics demands specific socialaction to palliate or remove their distress.When harm does occur – in the form of disease,for example –, individuals are no longervulnerable – for they have ceased to be intact–, they become susceptible to additionaldeprivations and sickness; integrity isdemeaned and dignity is offended, leading tostates of dysfunction that require specificremedial social practices, aimed at treatingand removing injuries.The main point this paper addresses is thatvulnerability – as well as dignity and integrity – are descriptive characteristics ofhuman beings qua humans, which are not normative in themselves, but fundamental enoughto inspire bioethical requirements of protection and respect for human rights in thewake of social justice. A clear distinction must be made in regard to human beings who areinjured by poverty, sickness, discriminating deprivations or suffer otherdestitutions, having ceased to be only vulnerable for they are no longer intact. Theseindividuals and populations require more than protection, their needs must be met byspecific care and remedial measures to be identified and instigated by bioethics quaapplied ethics. (shrink)

Many accounts of informed consent in medical ethics claim that it is valuable because it supports individual autonomy. Unfortunately there are many distinct conceptions of individual autonomy, and their ethical importance varies. A better reason for taking informed consent seriously is that it provides assurance that patients and others are neither deceived nor coerced. Present debates about the relative importance of generic and specific consent do not address this issue squarely. Consent is a propositional attitude, so intransitive: complete, wholly specific (...) consent is an illusion. Since the point of consent procedures is to limit deception and coercion, they should be designed to give patients and others control over the amount of information they receive and opportunity to rescind consent already given. (shrink)

Few early debates in bioethics invigorated the field to the same extent as the one concerning whether or not young children could be used in nontherapeutic research. Though some of the issues in the debate were never fully settled, a consensus emerged, reflected in the Common Rule—that surrogates could consent to use children in such research, although once the level of risk rises above minimal, additional stipulations are required. Nontherapeutic research on cognitively impaired elderly people raises equally complex ethical issues, (...) but there has been a dearth of debate in the literature about whether such research is ethically permissible. Instead, there have been many published recommendations regarding the circumstances under which such research can occur. (shrink)

Imagine you are walking down a city street. It is windy and raining. Amidst the bustle you see a young woman. She sits under a railway bridge, hardly protected from the rain and holds a woolen hat containing a small number of coins. You can see that she trembles from the cold. Or imagine seeing an old woman walking in the street at dusk, clutching her bag with one hand and a walking stick with the other. A group of male (...) youths walk behind her without overtaking, drunk and in the mood for mischief. It doesn't need an academic to say what vulnerability is. We can all see it, much more often than we care to. (shrink)

When patients are in vegetative states and their lives are maintained by medical devices, their surrogates might offer proxy consents on their behalf in order to terminate the use of the devices. The so-called ’substituted judgment thesis’ has been adopted by the courts regularly in order to determine the validity of such proxy consents. The thesis purports to evaluate proxy consents by appealing to putative counterfactual truths about what the patients would choose, were they to be competent. The aim of (...) this paper is to reveal a significant limitation of the thesis, which has hitherto been recognised only vaguely and intuitively. By appealing to the metaphysics of counterfactuals I explain how the thesis fails to determine the validity of proxy consents in a number of actual cases. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

Starting from two observations regarding nursing ethics research in the past two decades, namely, the dominant influence of both the empirical methods and the principles approach, we present the cornerstones of a foundational argument-based nursing ethics framework. First, we briefly outline the general philosophical–ethical background from which we develop our framework. This is based on three aspects: lived experience, interpretative dialogue, and normative standard. Against this background, we identify and explore three key concepts—vulnerability, care, and dignity—that must be observed in (...) an ethical approach to nursing. Based on these concepts, we argue that the ethical essence of nursing is the provision of care in response to the vulnerability of a human being in order to maintain, protect, and promote his or her dignity as much as possible. (shrink)

Summary Care and cure have been described as different kinds of ethical approaches to clinical situations. Female concerns in nursing care have been contrasted with masculine, cure orientated physician's attitudes. Ethics in such different voices may have sociologic determinants, but they do not represent intrinsic distinctions. Medicine has shown a divergent development, on the one hand stressing cure in a deterministic and instrumental way, on the other hand being aware that disease is as much a pathographic as a biographic, care‐requiring (...) existential situation. Disease is a breakdown of the living organism, to be cured by therapeutic efforts, but it is also the distressing failure of the lived body, requiring concern and care. Based on Lévinas’ ethics of encounter, it is suggested that any interpersonal relatedness is based on concern for the other, being grounded on an essentially ethical interaction. The clinical encounter is a paradigm of such ethics‐based relationships, which necessarily builds on awareness of the other qua other, and is concerned with fulfilling the therapeutic mandate. Caring for the other means doing one's best to help her/him, so that care and cure are inextricably interwoven, although care is the more fundamental form of human relatedness. Thus, neither gender nor professional tasks can allow for a caring attitude to develop without curing concerns, just as trying to cure without caring is unthinkable. (shrink)

The Mental Capacity Act 2005 has provided unified scope in the British medical system for proxy consent with regard to medical decisions, in the form of a lasting power of attorney. While the intentions are to increase the autonomous decision making powers of those unable to consent, the author of this paper argues that the whole notion of proxy consent collapses into a paternalistic judgement regarding the other person’s best interests and that the new legislation introduces only an advisor, not (...) a proxy with the moral authority to make treatment decisions on behalf of another. The criticism is threefold. First, there is good empirical evidence that people are poor proxy decision makers as regards accurately representing other people’s desires and wishes, and this is therefore a pragmatically inadequate method of gaining consent. Second, philosophical theory explaining how we represent other people’s thought processes indicates that we are unlikely ever to achieve accurate simulations of others’ wishes in making a proxy decision. Third, even if we could accurately simulate other people’s beliefs and wishes, the current construction of proxy consent in the Mental Capacity Act means that it has no significant ethical authority to match that of autonomous decision making. Instead, it is governed by a professional, paternalistic, best-interests judgement that undermines the intended role of a proxy decision maker. The author argues in favour of clearly adopting the paternalistic best-interests option and viewing the proxy as solely an advisor to the professional medical team in helping make best-interests judgements. (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 introduction of and the commitment to evidence-based nursing in all care settings have led to a rapid increase of intervention and outcome-based research programs. Yet, the topics of nursing research are not only affected by interventions and outcomes but also affected by the concept of caring derived from humanistic philosophy. Considering this twofold orientation of nursing science, nuanced ethical regulations for nursing research programs are called for. In addition to the different research approaches, further arguments for ethical regulations are (...) as follows: first, the different degrees of contextualization and the variety of participation models regarding the target groups; second, the capacities and opportunities of participants; and third, the caring relationship between nurses and research subjects. To capture these special features of nursing science, four approaches to fill the gaps in existing ethical regulations for nursing research are proposed: (a) process orientation, (b) community orientation, (c) context orientation, and (d) relation orientation. (shrink)

Persons of diminished capacity, especially those who are still legally competent but are de facto incompetent should still be able to participate in moderately risky research projects that benefit the class of persons with similar diseases. It is argued that this view can be supported with a modified communitarianism, a philosophy ofmedicine that holds that health care is a joint responsibility that meets foundational human needs. The mechanism for obtaining a substituted consent I call ``community consent,'' and distinguish this from (...) the usual family or surrogate consent for treatment. Care givers are included in the community that might consent for an individual who has no identifiable family members. (shrink)

SARGENT A. Nursing Inquiry 2012; 19: 134–143 [Epub ahead of print]Reframing caring as discursive practice: a critical review of conceptual analyses of caring in nursingThis study critically examines the way in which the concept of caring is presented in the nursing literature through conceptual analytic approaches. A critical reflection on the potential consequences of representing a concept of caring as vague and ambiguous, yet central to ontology and epistemology in professional nursing is presented drawing on comparisons between the conceptual analyses (...) of caring, and of structuralist perspectives of language, and how this potentially limits scholarship in this area. A search of the literature revealed nine conceptual papers. These papers highlight the self‐referential characteristics of the concept of caring, and of analytical methods in general. It is proposed that this is the result of a systematic adherence to a rigid, structuralist view of language, whereby stable relationships between words and their meanings are assumed. An alternative perspective is offered by viewing caring as a discursive practice rather than a fixed conceptual entity, calling into question the role that the concept plays in nursing practice. A poststructuralist perspective requires caring to be perceived as a discourse of nursing that is fluid and contingent, rather than a central and guiding concept, opening up a new orientation for nursing scholarship in caring research. (shrink)

This study aimed to describe and compare the views of nurses and older patients' relatives on factors restricting the maintenance of patient integrity in long-term care. The purposive sample comprised 222 nurses and 213 relatives of older patients in four Finnish long-term care institutions. The data were collected using a self-developed questionnaire addressing five sets of factors relating to patients, relatives, nurses, the organization and society. The maintenance of patient integrity was restricted by: (1) social factors, including lack of respect (...) for long-term geriatric care and lack of adequate resources; (2) patient factors relating to forgetfulness; and (3) factors relating to nurses and relatives in maintaining patient integrity. Better maintenance of patient integrity requires that more consideration is paid to issues of social respect and to the availability of adequate resources. Closer attention must be given to patients who are forgetful and unable to take part in decision making. (shrink)

Human beings are essentially vulnerable in the view that their existence qua humans is not given but construed. This vulnerability receives basic protection from the State, expressed in the form of the universal rights all citizens are meant to enjoy. In addition, many individuals fall prey to destitution and deprivation, requiring social action aimed at recognising the specific harms they suffer and providing remedial assistance to palliate or remove their plights.Citizens receive protection against their biologic vulnerability by means of an (...) in rem right to health [care], which is more an attitude of protection than a specific programme. When individuals become susceptible, that is, biologically weak or diseased, they also increase their predisposition to additional harm, and require social actions to treat their demeaned condition. Such assistance takes the form of positive healthcare rights.Research on human beings has been slow to observe that the subjects recruited are susceptible, especially so if research is done in less developed countries. By mislabelling them as vulnerable – a characteristic they share with all humans – sponsors avoid registering the deprivation these people suffer, and the ethical obligation to offer them remedial help.The distinction between vulnerability and susceptibility also marks the difference between being intact but fragile – vulnerable – and being injured and predisposed to compound additional harm – susceptible. Awareness of this difference should give additional force to the rejection of double standards in research ethics. (shrink)

The aim of this article is to take relational ethics concepts and apply them to the context of application to research ethics committees for approval to carry out research. The process of a multinational qualitative research application is described. The article suggests that a relational ethics approach can address two issues: how qualitative proposals are interpreted by research ethics committees and how this safeguards potentially vulnerable respondents. In relational terms, the governance of a research project may be enhanced by shared (...) ownership and willingness to engage in mutual dialogue. This challenges both researchers and research ethics committees to reframe their understanding of roles and functions in the assessment of research protocols, particularly those of a qualitative nature and those that address end-of-life issues. (shrink)

Conducting research with vulnerable populations involves careful attention to the interests of individuals. Although it is generally understood that informed consent is a necessary prerequisite to research participation, it is less clear how to proceed when potential research participants lack the capacity to provide this informed consent. The rationale for assessing the assent or dissent of vulnerable individuals and obtaining informed consent by authorized representatives is discussed. Practical guidelines for recruitment of and data collection from people in the middle or (...) late stage of dementia are proposed. These guidelines were used by research assistants in a minimal risk study. (shrink)

The degree of success in creating quality care for people suffering from dementia is limited despite extensive research. This article describes Healthcare providers’ experience with the ethical challenges and possibilities in the relationship with patients suffering from dementia and its impact on quality care. The material is based on qualitative, in-depth individual narrative interviews with 12 professional Healthcare providers from two different nursing homes. The transcribed interview texts were subjected to a phenomenological–hermeneutical interpretation. To provide quality care to patients with (...) dementia, the Healthcare providers emphasized the importance of sensing and understanding the patients’ emotional and bodily expressions through sentient attentiveness and recognition of the patient as a person. They also described reciprocity of expressions in the relationship where the patient recognized them both as persons and Healthcare providers. The analyses of the findings are, inter alia, discussed in light of Løgstrup’s relational philosophy of ethics. (shrink)

The ethics of care, adopted in much of the nursing literature, is usually framed in opposition to the Kantian ethics of principle. Irrespective of whether the ethics of care is grounded in gender, as with Gilligan and Noddings, or inscribed on Heidegger's ontology, as with Benner, Kant remains the philosophical adversary, honouring reason rather than emotion, universality rather than context, and individual autonomy rather than interdependence. During the past decade, however, a great deal of Kantian scholarship – including feminist scholarship (...) – has rendered this series of oppositions questionable, challenging the view that an ethics of care and Kant's moral law are irreconcilable. This paper therefore re‐examines Kant's writings, drawing on recent scholarship, and argues both that they provide the care ethicists with everything they require, and that they offer something beyond an ethics of care, something that repairs the deficits in philosophies of caring. It concludes by suggesting that a Kantian ethics of care has significant implications for the construction of nursing knowledge. (shrink)

When patients are in vegetative states and their lives are maintained by medical devices, their surrogates might offer proxy consents on their behalf in order to terminate the use of the devices. The so‐called ‘substituted judgment thesis’ has been adopted by the courts regularly in order to determine the validity of such proxy consents. The thesis purports to evaluate proxy consents by appealing to putative counterfactual truths about what the patients would choose, were they to be competent. The aim of (...) this paper is to reveal a significant limitation of the thesis, which has hitherto been recognised only vaguely and intuitively. By appealing to the metaphysics of counterfactuals I explain how the thesis fails to determine the validity of proxy consents in a number of actual cases. (shrink)