Enhancement, hybris, and solidarity: a critical analysis of Sandel's The Case Against Perfection.

This article presents a critical analysis of the views of Michael Sandel on human enhancement in his book The Case Against Perfection (2007). Sandel argues that the use of biotechnologies for human enhancement is driven by a will to mastery or hybris, leading to an 'explosion of responsibility' and a disappearance of solidarity. I argue that Sandel is using a traditional concept of solidarity which leaves little room for individual differences and which is difficult to reconcile with the modern trend towards individual autonomy and cultural heterogeneity. With reference to the sociology of Giddens, I argue that the 'explosion of responsibility' can be considered an expression of the insecurity in modern society and the need for reflexivity in personal and social life. I argue that the need for reflexivity is a driving social and cultural force behind the interest in human enhancement, and that this trend can go together with a commitment to take care of the needs of others. I agree with Sandel that there is a risk that human enhancement may develop into 'hybris', particularly when enhancement is driven by scientism and a naturalist reduction of human values to neurological processes. Enhancement based on scientism will threaten solidarity defined by Honneth as an interactive relationship aimed at the mutual recognition of individual identities in relation to a shared value horizon. I will call for a reflective approach in which human enhancement technologies are explored in the context of a 'system of reference'. Such a reflective approach will help to protect against the hybris of scientism and to maintain solidarity with vulnerable groups.

Tools for testing decision-making capacity in dementia.

Background: dementia is a common cause of altered decision-making capacity. Determining whether an individual has the ability to make a specific decision can be very challenging for both clinicians and researchers. The UK legislation requires that we both promote residual capacity where possible, and protect vulnerable adults who cannot make independent decisions. We evaluated published instruments designed to aid in the assessment of capacity, focussing on those meeting the UK legal requirements. We also consider further disease and culture-specific factors which may influence decision making. Methods: a search of electronic databases was made for articles published between 2000 and 2017 detailing structured tools for the assessment of mental capacity. These were evaluated against the UK legal requirements. Results: nine tools were identified which fulfilled the UK legal requirements. Their design and structure varied, as did the level of reliability and validity data available. Some instruments can be tailored for a specific decisional scenario, whilst others are designed for use by particular patient groups. Discussion: a wide range of mental capacity assessment instruments is available, but not all fulfil the UK legal requirements. Healthcare professionals and researchers should be mindful of personal, cultural and disease-specific factors when assessing capacity. No gold standard for capacity assessment exists, which hampers the evaluation of different approaches. A combination of the opinion of a healthcare professional or researcher trained in capacity evaluation, plus the use of a structured assessment tool is the most robust approach.

Smart homes, private homes? An empirical study of technology researchers' perceptions of ethical issues in developing smart-home health technologies.

BACKGROUND: Smart-home technologies, comprising environmental sensors, wearables and video are attracting interest in home healthcare delivery. Development of such technology is usually justified on the basis of the technology's potential to increase the autonomy of people living with long-term conditions. Studies of the ethics of smart-homes raise concerns about privacy, consent, social isolation and equity of access. Few studies have investigated the ethical perspectives of smart-home engineers themselves. By exploring the views of engineering researchers in a large smart-home project, we sought to contribute to dialogue between ethics and the engineering community. METHODS: Either face-to-face or using Skype, we conducted in-depth qualitative interviews with 20 early- and mid-career smart-home researchers from a multi-centre smart-home project, who were asked to describe their own experience and to reflect more broadly about ethical considerations that relate to smart-home design. With participants' consent, interviews were audio-recorded, transcribed and analysed using a thematic approach. RESULTS: Two overarching themes emerged: in 'Privacy', researchers indicated that they paid close attention to negative consequences of potential unauthorised information sharing in their current work. However, when discussing broader issues in smart-home design beyond the confines of their immediate project, researchers considered physical privacy to a lesser extent, even though physical privacy may manifest in emotive concerns about being watched or monitored. In 'Choice', researchers indicated they often saw provision of choice to end-users as a solution to ethical dilemmas. While researchers indicated that choices of end-users may need to be restricted for technological reasons, ethical standpoints that restrict choice were usually assumed and embedded in design. CONCLUSIONS: The tractability of informational privacy may explain the greater attention that is paid to it. However, concerns about physical privacy may reduce acceptability of smart-home technologies to future end-users. While attention to choice suggests links with privacy, this may misidentify the sources of privacy and risk unjustly burdening end-users with problems that they cannot resolve. Separating considerations of choice and privacy may result in more satisfactory treatment of both. Finally, through our engagement with researchers as participants this study demonstrates the relevance of (bio)ethics as a critical partner to smart-home engineering.

Family solidarity and informal care: the case of care for people with dementia.

According to Bayertz the core meaning of solidarity is the perception of mutual obligations between the members of a community. This definition leaves open the various ways solidarity is perceived by individuals in different communities and how it manifests itself in a particular community. This paper explores solidarity as manifested in the context of families in respect of caregiving for a family member who has become dependent because of disease or illness. Though family caregiving is based on the same perception of mutual obligation as the solidarity that supports welfare arrangements in society, the manifestation of solidarity in families is different. Solidarity that underpins welfare arrangements is based on a perception of mutual obligation towards an anonymous dependent other and is enforced by the government. Solidarity in families is directed towards a concrete other and is based on free choice, albeit often accompanied by a strong sense of personal duty. In this paper we try to distinguish between solidarity as a sociological concept and as a moral concept. An important moral element of solidarity, as expressed in families, is the need for recognition of family caregivers, not only of their concrete practical efforts, but also of their own identity as caregivers and as individuals. We illustrate this argument by referring to examples in the Nuffield Council on Bioethics report Dementia: ethical issues, about the experiences of family caregivers in dementia care and the importance for them of recognition of their role.

How 'decent' is a decent minimum of health care?

This article tries to analyze the meaning of a decent minimum of health care, by confronting the idea of decent care with the concept of justice. Following the ideas of Margalith about a decent society, the article argues that a just minimum of care is not necessarily a decent minimum. The way this minimum is provided can still humiliate individuals, even if the end result is the best possible distribution of the goods as seen from the viewpoint of justice. This analysis is combined with an analysis from the perspective of solidarity, particularly of reflective solidarity, as a way to develop decent care, which is care that does not humiliate individuals and maintains their dignity.

A transhumanist fault line around disability: morphological freedom and the obligation to enhance.

The transhumanist literature encompasses diverse non-novel positions on questions of disability and obligation reflecting long-running political philosophical debates on freedom and value choice, complicated by the difficulty of projecting values to enhanced beings. These older questions take on a more concrete form given transhumanist uses of biotechnologies. This paper will contrast the views of Hughes and Sandberg on the obligations persons with "disabilities" have to enhance and suggest a new model. The paper will finish by introducing a distinction between the responsibility society has in respect of the presence of impairments and the responsibility society has not to abandon disadvantaged members, concluding that questions of freedom and responsibility have renewed political importance in the context of enhancement technologies.

Addressing research integrity challenges: from penalising individual perpetrators to fostering research ecosystem quality care.

Concern for and interest in research integrity has increased significantly during recent decades, both in academic and in policy discourse. Both in terms of diagnostics and in terms of therapy, the tendency in integrity discourse has been to focus on strategies of individualisation (detecting and punishing individual deviance). Other contributions to the integrity debate, however, focus more explicitly on environmental factors, e.g. on the quality and resilience of research ecosystems, on institutional rather than individual responsibilities, and on the quality of the research culture. One example of this is the Bonn PRINTEGER Statement. This editorial to the LSSP thematic series (article collection) entitled Addressing integrity challenges in research: the institutional dimension invites authors to contribute to the research integrity debate. Notably, we are interested in submissions addressing issues such as institutional responsibilities, changes in the research climate, duties of research managers and research performing or research funding organisations (RPOs and RFOs) as well as new approaches to integrity education.

Euthanasia and assisted suicide in Dutch hospitals: the role of nurses.

AIM: To report a study on the role of nurses in euthanasia and physician-assisted suicide in hospitals, conducted as part of a wider study on the role of nurses in medical end-of-life decisions. BACKGROUND: Issues concerning legislation and regulation with respect to the role of nurses in euthanasia and physician-assisted suicide gave the Dutch Minister for Health reason to commission a study on the role of nurses in medical end-of-life decisions in hospitals, homecare and nursing homes. METHOD: A questionnaire was sent in 2003 to 692 nurses employed in 73 hospital locations. The response suitable for analysis was from 532 (76.9%) nurses. Data were quantitatively analysed using spss version 11.5 for Windows. RESULTS: In almost half of the cases (45.1%), the nurse was the first with whom patients discussed their request for euthanasia or physician-assisted suicide. Consultations between physicians and nurses quite often took place (78.8%). In several cases (15.4%), nurses themselves administered the euthanatics with or without a physician. It is not self-evident that hospitals have guidelines concerning euthanasia/physician-assisted suicide. CONCLUSIONS: In the decision-making process, the consultation between the physician and the nurse needs improvement. In administering the euthanatics, physicians should take responsibility and should not leave these actions to nurses. Guidelines may play an important role to improve the collaboration between physicians and nurses and to prevent procedural, ethical and legal misunderstandings. RELEVANCE TO CLINICAL PRACTICE: Nurses in clinical practice are often closely involved in the last stage of a person's life. Consequently, they are often confronted with caring for patients requesting euthanasia or physician-assisted suicide. The results provide relevant information and may help nurses in defining their role in euthanasia and physician-assisted suicide, especially in case these practices should become legalised.

Increasing individual responsibility in Dutch health care: is solidarity losing ground?

This article presents various developments in Dutch health care policy toward a greater role for individual financial responsibility, such as cost-control measures, priority setting, rationing, and market reform. Instead of the collective responsibility that is characteristic of previous times, one can observe in government policies an increased emphasis on the need for individuals to take care of one's own health and health care needs. Moreover, surveys point to decreasing levels of public support for "unlimited" solidarity and "irresponsible" health behavior. This article attempts to answer the question of how these policies and public attitudes are limiting the ethical principles of solidarity and equal access to care that have long guided Dutch health care policy making. The authors argue that from a moral point of view, the increased emphasis on individual responsibility is acceptable as long as it does not affect solidarity with those weak and vulnerable groups who are not able to take individual responsibility, such as the demented and mentally handicapped.

'Facing the future': the government's real agenda for health visitors.

This paper draws on the ideas of Foucault to analyse the government's recent review of the role of health visitors in England, 'Facing the future'. It outlines the Foucauldian concepts of discourse, knowledge and power and examines the review document following an accepted six-step process for the analysis of discourse. The analysis considers how 'Facing the future' constructs the present and future roles of health visitors, and elucidates the 'regimes of truth' that operate in official policy. It highlights the way in which the document proposes a shift away from health visitors' traditional emphasis on building supportive relationships with clients, toward a stronger emphasis on outcome-oriented service provision by multi-skilled teams. In line with contemporary public health discourse, 'Facing the future' also reinforces the future role of health visitors as being one that supports individuals to make lifestyle changes to improve health rather than addressing wider environmental and social determinants. Although 'Facing the future' purports to reflect a consultative review and to encourage debate within the health visiting profession, its form is more akin to a promotional document to implement government proposals for social change.

Is rationing the inevitable consequence of medical advance?

The past decades have seen an impressive advance in medical technology. However, there are concerns about the growing costs of medical technology and the need to ration health care services. Some economists argue that the use of technology might be expensive now but that it would be unwise to ration technological advances as they will save money in the long-term. The author argues that increased productivity in health care does not necessarily lead to reduction of costs. In fact, it has often resulted in increased costs because such innovations made possible a widening of the indications for the treatment. Rationing of medical technology is inevitable, as further advances of technology will lead to higher pressures on the financing of the public health care system and the increased removal from the basic package of long-term care services for chronic conditions, the provision of which is an important responsibility of our society.

Client-centered home care: balancing between competing responsibilities.

This study explores and describes the perceptions of nurses with respect to everyday client-centered care. A grounded theory study was conducted with 10 Dutch nurses and auxiliary nurses giving home care to chronically ill clients. Participatory observations and semistructured interviews were held. Nurses perceived roles and responsibilities competing with the role as a responsive professional to the client demand: a critical professional, developer of client competencies, individual, and employee. Strategies in balancing between competing responsibilities were distinguished: pleasing, dialoguing, directing, and detaching. Directing (related to impaired client competencies) and detaching (related to organizational barriers) were also used as second choice strategies. Effectively balancing between competing responsibilities was seen in dialoguing and directing as second choice. Conditions identified related to these strategies are awareness of, and responsibility taking for competing responsibilities. Recommendations for practice concern a care relationship and a dialogue with the client, critical ethical reflection, professional autonomy, self-assertiveness and organizational support.

Solidarity, justice, and recognition of the other.

Solidarity has for a long time been referred to as the core value underpinning European health and welfare systems. But there has been debate in recent years about whether solidarity, with its alleged communitarian content, can be reconciled with the emphasis on individual freedom and personal autonomy. One may wonder whether there is still a place for solidarity, and whether the concept of justice should be embraced to analyse the moral issues regarding access to health care. In this article, I will answer this question by analysing the normative foundations of the concept of justice, followed by a deeper examination of the concept of solidarity in continental philosophy. More specifically, I will compare the philosophical traditions rooted in Kant (with emphasis on autonomy and individual rights) to approaches rooted in Hegel (with emphasis on individual relations of recognition). In addition, I will present the work of Avishai Margalit on the decent society to criticize a predominantly liberal approach to access to health care. The importance of solidarity lies particularly in its emphasis on relational aspects and the role of recognition in care practices, which are usually ignored in liberal approaches to justice. However, the article will argue that solidarity is not an alternative to a rights-based concept of justice, but must be considered as a necessary complement to it.

The Ethics of Deprescribing in Older Adults.

Deprescribing is the term used to describe the process of withdrawal of an inappropriate medication supervised by a clinician. This article presents a discussion of how the Four Principles of biomedical ethics (beneficence, non-maleficence, autonomy, and justice) that may guide medical practitioners' prescribing practices apply to deprescribing medications in older adults. The view of deprescribing as an act creates stronger moral duties than if viewed as an omission. This may explain the fear of negative outcomes which has been reported by prescribers as a barrier to deprescribing. Respecting the autonomy of older adults is complex as they may not wish to be active in the decision-making process; they may also have reduced cognitive function and family members may therefore have to step in as surrogate decision-makers. Informed consent is intended as a process of information giving and reflection, where consent can be withdrawn at any time. However, people are rarely updated on the altered risks and benefits of their long-term medications as they age. Cessation of inappropriate medication use has a large financial benefit to the individual and the community. However, the principle of justice also dictates equal rights to treatment regardless of age.

The ethical basis of the precautionary principle in health care decision making.

This article explores the relation between the precautionary and health care decision making. Decision making in medical practice as well as health policy is characterized by uncertainty. On the level of clinical practice for example, one never knows in advance whether one has made the right diagnosis or has opted for the right treatment. Though medical decisions have a risk on serious harms and burdens, the precautionary principle is not applicable to health care. This principle holds that one should not act when there is no scientific proof that no harms will result from a medical act or a policy decision. However, in clinical practice there is a duty to act. Physicians have an obligation to do good to their patients and have to weigh the benefits against possible harms and burdens. The basis virtue of medical decision making is not avoidance of risks, as stated in the precautionary principle, but the prudent assessment of benefits, burdens, and harms, in relation to other ethical principles like respect for autonomy and justice. The precautionary principle does play a role in health care, but it should never rule medical decision making as an absolute principle. This is not only true for clinical decision making, but also for the area of health policy. Physicians and other health care decision makers need to have knowledge about the possible effects of treatments or the precision of diagnostic procedures in order to reduce harm and promote well-being. Evidence-based medicine may contribute to the wisdom of health care decision makers, but this evidence-based wisdom should always be applied under the guidance of prudence, which is the central virtue of health care decision making.

Improving informed consent in percutaneous coronary revascularisation.

Informed consent is indispensable in contemporary medicine, especially in cases where the risks are high or there is true clinical equipoise, as in much invasive cardiology and cardiothoracic surgery practice. In this article we illustrate the principle of informed consent and describe how consent requirements have become more exacting in response to the rise of autonomy as the dominant principle in biomedical ethics. We outline some criticisms of informed consent, discuss why current requirements may never be achievable, and describe some of the vast literature aimed at "solving" the problem. We argue that respect for autonomy is just one of the principles of biomedical ethics and that the implementation of this principle must be weighed in the clinical context against the other principles, namely beneficence, non-maleficence and justice. The way we implement informed consent should be based on an ethical assessment of the clinical situation, including the invasiveness of the procedure, equipoise and the importance of patient values, and not on practical issues. We conclude that focusing on the whole decision-making process, effective communication, and a proportionate and individualised approach to consent could go some way to improve the experience of many patients in cardiology.