When our nearest and dearest experience medical crises, we may need to step into caregiving roles. But in doing so, we may find that our new caregiving relationship is actually in tension with the loving relationship that motivated us towards care. What we owe and are entitled to as friends, spouses, and family members, can be different from what we owe and are entitled to as caregivers. For this reason, caregiving carries with it the risk of a type of moral (...) distress that I call “role conflict distress.” Rather than view role conflict distress as a sign that we are falling short, I suggest that it actually speaks to the commitment that we have to the loving relationship that grounds our duty of care. (shrink)

The significance of big data for driving health research and improvements in patient care is well recognised. Along with these potential benefits, however, come significant challenges, including those concerning the sharing and linkage of health and social care records. Recently, there has been a shift in attention towards a paradigm of data sharing centred on the ‘trusted research environment’ (TRE). TREs are being widely adopted by the UK’s health data initiatives including Health Data Research UK (HDR UK),1 Our Future Health2 (...) and Genomics England.3 A recent review commissioned by the UK’s Department of Health and Social Care (hereafter referred to as the ‘Goldacre Review’) places TREs at the heart of its recommendations around the future of National Health Service (NHS) health data sharing for research, describing them as the ‘clear path forward’ to a health data system in which trust is ‘earned’ through ‘provable, credible steps to protect patient privacy, and by being transparent with everyone about everything that is done with their deepest medical secrets’.4 We argue that rather than building public trust, the TRE model actually reduces the need for trust in the use and sharing of patient health data. This is because trust is importantly connected to vulnerability and uncertainty; an essential part of trusting someone is accepting that one’s trust could be disappointed or betrayed. In attempting to provide assurances or guarantees of data privacy and security, TREs strive to remove this vulnerability, and so remove the need for trust. We do not see this as a problem and are broadly supportive of this kind of data sharing model because of the increased security and oversight it provides. However, having argued that TREs are not actually concerned with trust, we consider the importance of being precise about the words that we use …. (shrink)

The modern biological definition of a chimera is a single organism composed of cells with multiple distinct genotypes. Chimeras combining human and nonhuman cells are invaluable for various kinds of research, providing a platform for the study of human cell development while avoiding the ethical issues involved in conducting this research on human subjects. There is also the possibility that human/nonhuman chimeras could one day be used to produce human organs for transplant. Yet human/nonhuman chimeras raise a number of unique (...) ethical challenges as well. Critics worry that they are ‘unnatural’, or will cause a kind of ‘moral confusion’, or pose a threat to human dignity. There are also concerns about the kinds of treatment we might owe to human/nonhuman chimeras. For example, introducing human pluripotent stem cells into a gorilla blastocyst could result in the animal developing a ‘humanlike’ brain, or developing human behaviours or characteristics. Would we need to treat such a being as we do our fellow humans? This chapter examines various arguments concerning research involving human/nonhuman chimeras, and the implications of these arguments for research policy. I conclude that research involving human/nonhuman chimeras is not intrinsically morally wrong, though it may be morally impermissible in some cases. However, I criticize the standard approach to evaluating the treatment of nonhumans in research, arguing that the moral treatment of nonhuman animals, including human/nonhuman chimeras, depends on contextual factors, rather than their moral status. (shrink)

Patients in the vegetative state are wholly unaware of themselves, or their surroundings. However, a minority of patients diagnosed as vegetative are actually aware. What is the well-being of these patients? How are their lives going, for them? It has been argued that on a reasonable conception of well-being, these patients are faring so poorly that it may be in their best interests not to continue existing. I argue against this claim. Standard conceptions of well-being do not clearly support the (...) conclusion that these patients would be better off having life-sustaining treatment withdrawn, and in fact, it may be possible for these patients to retain a passable level of well-being. I suggest that further research into the subjective experiences of these patients will allow us to better promote their well-being. (shrink)

The ethical debate about neurotechnologies—including both drugs and implanted devices—has been largely framed around the questions of whether and when these technologies could damage or promote authenticity. Patients can experience changes in mood, behavior, emotion, or preferences—seemingly, changes in character or personality. Some describe such changes by saying they feel like different people; that they have become either more or less themselves; or that they feel as though some of their moods, behaviors, emotions or preferences are not their own. These (...) kinds of statements are used to describe both changes that a drug or device is... (shrink)

How do ethical investment funds choose their ethical criteria? How intelligent is this process from an ethical point of view? This paper reports on his field work carried out as part of the Bath University ‘Morals and Money’ Project. After completing this research, Dr. Craig Mackenzie left academia to become ethics development officer at Friends Provident. He can be contacted at 15 Old Bailey, London, EC4M 7AP; c.mackenzie@stewardship.co.uk.

Patients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient’s written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient’s best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, by (...) using a patient’s past wishes and values to reconstruct what they would have chosen for themselves. In this paper, the author argues that for a certain population of patients, the standard interpretation of substituted judgment cannot ensure the preservation of patient autonomy. Patients with “covert awareness” may continue to have values and an authentic sense of self, which may differ from their past values and wishes. Accordingly, surrogate decision makers should make decisions based on how the patient is likely to experience their condition in the present, rather than their past wishes and values. (shrink)

Powered by ‘big health data’ and enormous gains in computing power, artificial intelligence and related technologies are already changing the healthcare landscape. Harnessing the potential of these technologies will necessitate partnerships between health institutions and commercial companies, particularly as it relates to sharing health data. The need for commercial companies to be trustworthy users of data has been argued to be critical to the success of this endeavour. I argue that this approach is mistaken. Our interactions with commercial companies need (...) not, and should not, be based on trust. Rather, they should be based on confidence. I begin by elucidating the differences between trust, reliability, and confidence, and argue that trust is not the appropriate attitude to adopt when it comes to sharing data with commercial companies. I argue that what we really should want is confidence in a system of data sharing. I then provide an outline of what a confidence-worthy system of data sharing with commercial companies might look like, and conclude with some remarks about the role of trust within this system. (shrink)

When experienced in-person, engagement with art has been associated—in a growing body of evidence—with positive outcomes in wellbeing and mental health. This represents an exciting new field for psychology, curation, and health interventions, suggesting a widely-accessible, cost-effective, and non-pharmaceutical means of regulating factors such as mood or anxiety. However, can similar impacts be found with online presentations? If so, this would open up positive outcomes to an even-wider population—a trend accelerating due to the current COVID-19 pandemic. Despite its promise, this (...) question, and the underlying mechanisms of art interventions and impacts, has largely not been explored. Participants were asked to engage with one of two online exhibitions from Google Arts and Culture. With just 1–2 min exposure, both improved negative mood, state-anxiety, loneliness, and wellbeing. Stepdown analysis suggested the changes can be explained primarily via negative mood, while improvements in mood correlated with aesthetic appraisals and cognitive-emotional experience of the exhibition. However, no difference was found between exhibitions. We discuss the findings in terms of applications and targets for future research. (shrink)

Patients with severe disorders of consciousness are thought to be unaware of themselves or their environment. However, research suggests that a minority of patients diagnosed as having a disorder of consciousness remain aware. These patients, designated as having “cognitive motor dissociation”, can demonstrate awareness by imagining specific tasks, which generates brain activity detectable via functional neuroimaging. The discovery of consciousness in these patients raises difficult questions about their well-being, and it has been argued that it would be better for these (...) patients if they were allowed to die. Conversely, I argue that CMD patients may have a much higher level of well-being than is generally acknowledged. It is far from clear that their lives are not worth living, because there are still significant gaps in our understanding of how these patients experience the world. I attempt to fill these gaps, by analyzing the neuroscientific research that has taken place with these patients to date. Having generated as comprehensive a picture as possible of the capacities of CMD patients, I examine this picture through the lens of traditional philosophical theories of well-being. I conclude that the presumption that CMD patients do not have lives worth living is not adequately supported. (shrink)

In his recent book Reflective Democracy, Robert Goodin argues that 'external-collaborative' models of democratic deliberation procedures need to be supplemented by 'internal-reflective' deliberation. The exercise of the moral imagination plays a central role in Goodin's account of 'democratic deliberation within'. By imaginatively putting ourselves in the place of a range of others, he argues, including those who maybe not be able to represent their own interests, we can make their points of view 'communicatively present' in deliberation. Goodin's argument emphasizes the (...) role of art and other forms of cultural representation in helping to bring about this expansion of moral imagination. Drawing on debates in philosophy of mind concerning the scope and limits of our capacities to simulate other minds, I argue that Goodin's analysis of 'democratic deliberation within' conflates different kinds of imaginative project. In doing so, it underestimates both the difficulties of imaginatively putting ourselves in the place of others and the political risks in doing so. I argue, alternatively, that moral engagement with others involves the capacity for sympathy and that art and other forms of cultural representation can enlarge the scope of our sympathies, by assisting us to overcome imaginative resistance to alien points of view. In developing this argument, I provide a qualified defense of Iris Young's claim that respect for others involves 'asymmetrical reciprocity'. (shrink)

Unresponsive wakefulness syndrome is a disorder of consciousness wherein a patient is awake, but completely non-responsive at the bedside. However, research has shown that a minority of these patients remain aware, and can demonstrate their awareness via functional neuroimaging; these patients are referred to as having ‘cognitive motor dissociation’. Unfortunately, we have little insight into the subjective experiences of these patients, making it difficult to determine how best to promote their well-being. In this paper, I argue that the capacity to (...) experience pain or pleasure is a key component of well-being for these patients. While patients with unresponsive wakefulness syndrome are believed to be incapable of experiencing pain or pleasure, I argue that there is evidence to support the notion that CMD patients likely can experience pain and pleasure. I analyze current neuroscientific research into the mechanisms of pain experience in patients with disorders of consciousness, and provide an explanation for why CMD patients likely can experience physical pain. I then do the same for physical pleasure. I conclude that providing these patients with pleasurable experiences, and avoiding subjecting them to pain, are viable means of promoting their well-being. (shrink)

An important goal of ethical investment is to influence companies to improve their ethical and environmental performance. The principal means that many ethical funds employ is passive market signalling, which may not, on its own, have a significant effect. A much more promising approach may be active engagement. This paper reports on a questionnaire study of a sample of 1146 ethical investors in order to assess whether U.K. ethical investors would support more activist ethical investment and whether they would be (...) prepared to invest in companies which are failing ethically in order to do so. The results show general support for the current practice of passive signalling accompanied by "soft" engagement in the form of lobbying and the development of dialogue in order to improve corporate practice. The "harder" options of investing in companies that err in order to change them is, however, favoured by consistent minorities. (shrink)

The aim of this article is to give an account of a methodological link between drama and political theory. This account is drawn primarily from the early philosophical work of Deleuze. Following Deleuze, we will refer to it as ‘the method of dramatization’. We will argue that dramatization is a method aimed at determining the quality of political concepts by ‘bringing them to life’, in the way that dramatic performances bring to life the characters and themes of a play-script. We (...) demonstrate that this can be specified in relation to the development of this method in Deleuze's early philosophical work as a practical, critical and artistic method and, in relation to the ontological assumptions he articulated and defended in Difference and Repetition, as a process of intensification of the Idea of the political. By way of example, we discuss how the dramatization of the concept of ideology functions in Deleuze and Guattari's Anti-Oedipus and A Thousand Plateaus. We conclude with some lines of inquiry that could be pursued by political theorists looking to investigate further the dramatic nature of method in political theory. (shrink)

Rho GTPases are critically important and are centrally positioned regulators of the actomyosin cytoskeleton. By influencing the organization and architecture of the cytoskeleton, Rho proteins play prominent roles in many cellular processes including adhesion, migration, intra‐cellular transportation, and proliferation. The most important method of Rho GTPase regulation is via the GTPase cycle; however, post‐translational modifications (PTMs) also play critical roles in Rho protein regulation. Relative to other PTMs such as lipidation or phosphorylation that have been extensively characterized, protein oxidation is (...) a regulatory PTM that has been poorly studied. Protein oxidation primarily occurs from the reaction of reactive oxygen species (ROS), such as hydrogen peroxide (H2O2), with amino acid side chain thiols on cysteine (Cys) and methionine (Met) residues. The versatile redox modifications of cysteine residues exemplify their integral role in cell signalling processes. Here we review prominent members of the Rho GTPase family and discuss how lipidation, phosphorylation, and oxidation on conserved cysteine residues affects their regulation and function. (shrink)

This paper takes up the problem of the qualitative dimension from the perspectives of enactivism and John Dewey’s pragmatic naturalism. I suggest that the pragmatic naturalism of Dewey, combined with recent work on enactivism, points the way to a new account of the qualitative dimension, beyond the bifurcation of nature into the subjective and objective, or the qualitative and quantitative. The pragmatist-enactivist view I sketch here has both methodological-explanatory and ontological dimensions. Following the work of Francisco Varela and Evan Thompson, (...) I suggest that the qualitative dimension should be explained in experientialist and ecological terms. Following Dewey, I suggest that the ontology of the qualitative dimension should be understood in dynami c, relational, and ‘transactional’ terms. (shrink)

In this paper, we give an account of some of the necessary conditions for an effectively functioning public sphere, and then explore the question of whether these conditions allow for the expression of ideas and values that are fundamentally incompatible with those of liberalism. We argue that speakers who advocate or glorify violence against democratic institutions fall outside the parameters of what constitutes legitimate public debate and may in fact undermine the conditions necessary for the flourishing of free speech and (...) public dialogue more generally. (shrink)

Philosophers are inclined to raise philosophical dust by asking such questions as, what relations must exist between two body occurrences for them to be body occurrences of the same body? or what relation among person-stages makes them stages of the same person? and then complain that they cannot see the answers. I want to argue that the reason they cannot see the answers is that these questions and others like them are misconceived.

The UK government has recently committed to adopting a new policy—dubbed ‘Martha’s Rule’—which has been characterised as providing patients the right to rapidly access a second clinical opinion in urgent or contested cases. Support for the rule emerged following the death of Martha Mills in 2021, after doctors failed to admit her to intensive care despite concerns raised by her parents. We argue that framing this issue in terms of patient rights is not productive, and should be avoided. Insofar as (...) the ultimate goal of Martha’s Rule is the provision of a clinical service that protects patient safety, an approach that focuses on the obligations of the health system—rather than the individual rights of patients—will better serve this goal. We outline an alternative approach that situates rapid clinical review as part of a suite of services aimed at enhancing and protecting patient care. This approach would make greater progress towards addressing the difficult systemic issues that Martha’s Rule does not, while also better engaging with the constraints of clinical practice. (shrink)

Neuroimaging research regularly yields “incidental findings”: observations of potential clinical significance in healthy volunteers or patients, but which are unrelated to the purpose or variables of the study.

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)

In our recent paper ‘Trust and the Goldacre Review: Why TREs are not about trust’1 we argue that trusted research environments (TREs) reduce the need for trust in the use and sharing of health data, and that referring to these data storage systems as ‘trusted’ raises a number of concerns. Recent replies to our paper have raised several objections to this argument. In this reply, we seek to build on the arguments presented in our original paper, address some of the (...) misunderstanding of our position expressed in these replies, and sketch out where further research is needed. One of the central arguments of our original paper was that the language we use to describe data-sharing initiatives matters, because the way things like TREs are presented and framed makes a difference to what people can, and should, expect from them. However, there is a more basic and obvious problem with referring to these institutions as ‘trusted’: it begs the question about whether these institutions are, in fact, trusted. We cannot know in advance of these initiatives being implemented, established, and appropriate assessments completed, whether they are actually trusted. Further questions abound: whom might TREs eventually be trusted by? If some people end up trusting them, but not others, is it appropriate to call them ‘trusted’? At best, this is simply a case of wishful thinking (and a more accurate name would be ‘hopefully-TREs’). More problematically, this may be an instance of ‘trustworthiness-signalling’: an attempt to convince others to trust, without meeting the requirements for genuine trustworthiness. By calling TREs ‘trusted’, the implication seems to be that placing our trust in them is perfectly fine: they are the kinds of things that are trusted by others and can safely be trusted by us. But not only does simply calling something ‘trusted’ …. (shrink)

A rapidly growing proportion of health research uses ‘secondary data’: data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research, it remains largely unexamined in the context of research using secondary data. In this paper, we critically examine the arguments for a moral obligation to disclose individual (...) research findings in the context of primary research, to determine if they can be applied to secondary research. We conclude that they cannot. We then propose that the nature of the relationship between researchers and participants is what gives rise to particular moral obligations, including the obligation to disclose individual results. We argue that the relationship between researchers and participants in secondary research does not generate an obligation to disclose. However, we also argue that the biobanks or data archives which collect and provide access to secondary data may have such an obligation, depending on the nature of the relationship they establish with participants. (shrink)

Prognosis after severe brain injury is highly uncertain, and decisions to withhold or withdraw life‐sustaining treatment are often made prematurely. These decisions are often driven by a desire to avoid a situation where the patient becomes ‘trapped’ in a condition they would find unacceptable. However, this means that a proportion of patients who would have gone on to make a good recovery, are allowed to die. I propose a shift in practice towards the routine provision of aggressive care, even in (...) cases where the probability of survival and acceptable recovery is thought to be low. In conjunction with this shift, I argue in favour of a presumption towards withdrawing life‐sustaining treatment, including artificial nutrition and hydration, when it becomes clear that a patient will not recover to a level that would be acceptable to them. I then respond to three potential objections to this proposal. (shrink)