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.

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.

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.

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.

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.

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.

Synthetic biology & human health: some initial thoughts on the ethical questions and how we ought to approach them.

The emerging field of synthetic biology aims to move beyond our current state of being able to read and manipulate genetic code to being able to write it. Drawing on the other disciplines such as engineering it will allow scientists to create new artificial biological systems as well as modify and redesign systems which already exist in nature. This is likely to result in a range of new and innovative applications. This essay has three aims. First, it provides a brief introduction to synthetic biology, explains what it is, some of the ways in which it has been defined and some of its possible future applications. Second, the essay considers some of the ethical questions which synthetic biology may raise. Finally, the essay reflects on how we ought to answer these sorts of questions and suggests a more reflective, philosophical approach.

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.

Trust in medical decision-making concerning older people: the views of key professionals in the Dutch health care practice.

This article deals with the issue of public trust in decisions made by individual physicians, concerning older people, as perceived by various key professionals. While trust is a basic element in our health care service, it is at the same time a difficult phenomenon to conceptualize. This article tries to contribute to a better understanding of what trust in medical practice entails and what are the necessary conditions for a society to put trust in the medical profession. The focus is on care for older people under the condition of scarcity in health care resources. Our study has a qualitative design consisting of semi-structured in-depth interviews with 24 key professionals focusing on decision-makers and those in line of professionally organizing or influencing the decision-making process. We found roughly three categories of trust: distrust; trust; and qualified trust. In each category we found different reasons to give or withhold trust and different views on how far the discretionary power of doctors should go. We recommend promoting trust by addressing the criteria or limits brought forward in the qualified trust category. The preconditions as identified in the qualified trust section provide the boundaries and marking points between which physicians have to move regarding the care for older people. The qualifications provide us insight in where and how to invest in trust under these and under different circumstances. An important conclusion is that trust is never finished: trust needs to be gained and negotiated in a continuous process of action and interaction.

Human infertility: is medical treatment enough? A cross-sectional study of a sample of Italian couples.

OBJECTIVE: To explore infertile couples' well-being, needs and drop-out rates considering their previous gynaecological history, treatments and support received. METHODS: Self-reported questionnaires and a telephone follow-up were used to gather data from a sample of 57 Italian couples undergoing first-step procedures for infertility treatment. The questions concerned socio-demographic and personality factors, global perspective on generation, childbearing motivation, intra-psychic and relational dimensions. RESULTS: The study found a strong need for psychological and ethical counselling and showed that drop-out rates were related to psychological discontent. Among couples who had a longer history of infertility, those who had no previous treatments presented higher dyadic adjustment than those who had an history of previous treatments. Moreover, the study provides evidences of the stronger need for personal support for couples who had undergone previous treatments, and for psychological and ethical support for couples with previous generative failures. It also showed that there were beneficial effects to attending to couples' religious and ethical needs. CONCLUSION: Professional care for those who are undergoing or have undergone fertility treatment should (i) embrace a broader and more comprehensive perspective to understand infertile couples' experience and should (ii) provide appropriate therapy to cope with these experiences.

'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.

Alleviation of pain and symptoms with a life-shortening intention.

This article reports the findings of a study into the role of Dutch nurses in the alleviation of pain and symptoms with a life-shortening intention, conducted as part of a study into the role of nurses in medical end-of-life decisions. A questionnaire survey was carried out using a population of 1509 nurses who were employed in hospitals, home care organizations and nursing homes. The response rate was 82.0%; 78.1% (1179) were suitable for analysis. The results show that in about half of the cases (55.8%) nurses were involved in the decision making by the physician and that nurses were frequently (81.5%) involved in administering the medication. The authors' conclusion is that alleviation of pain and symptoms with a life-shortening intention represents a ;grey' area, in which physicians and nurses act on the basis of personal ethical norms rather than legal rules, professional guidelines or shared moral values.

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.