Informed Consent in Medicine

The dominant approach to assessing decision-making capacity in medicine focuses on determining the extent to which individuals possess certain core cognitive abilities. Critics have argued that this model delivers the wrong verdict in certain cases where patient values that are the product of mental disorder or disordered affective states undermine decision-making without undermining cognition. I argue for a re-conceptualization of what it is to possess the capacity to make medical treatment decisions. It is, I argue, the ability to track one’s (...) own personal interests at least as well as most people can. Using this idea, I demonstrate that it is possible to craft a solution for the problem cases—one that neither alters existing criteria in dangerous ways (e.g. does not open the door to various kinds of abuse) nor violates widely accepted ethical constraints on decision-making assessment. (shrink)

In medical sciences, health is measured by reference to our species-typical anatomy and functional integrity – the objective standard of human health. Proponents of transhumanism are committed to biomedical enhancement of human beings by augmenting our species-typical anatomy and functional integrity. I argue that this normative impasse is not only a problem for the transhumanist movement, but also undermines the rationale for some common medical interventions.

This article is about the information relevant to decision-making capacity in refusal of life-prolonging medical treatment cases. We examine the degree to which the phenomenology of the options available to the agent—what the relevant states of affairs will feel like for them—forms part of the capacity-relevant information in the law of England and Wales, and how this informational basis varies across adolescent and adult medical treatment cases. We identify an important doctrinal phenomenon. In the leading authorities, the courts appear to (...) count the first-personal phenomenology of the available options among the information that adolescents seeking to refuse life-prolonging treatment must understand and appreciate in order to possess capacity; adults are not held to this (higher) standard. We evaluate this differential treatment in light of philosophical work on transformative choice—decisions involving options whose sensory character, and effect on our values and preferences, are grasped only through experience itself. (shrink)

Are emotions bodily feelings or evaluative cognitions? What is happiness, pain, or “being moved”? Are there basic emotions? In this chapter, I review extant empirical work concerning these and related questions in the philosophy of emotion. This will include both (1) studies investigating people’s emotional experiences and (2) studies investigating people’s use of emotion concepts in hypothetical cases. Overall, this review will show the potential of using empirical research methods to inform philosophical questions regarding emotion.

Informed consent is a central concept for empirical and theoretical research concerning pregnancy management decisions and is often taken to be one of the more fundamental goals of the profession of genetic counseling. Tellingly, this concept has been seen by disability communities as salutary, despite longstanding critiques made by disability activists, advocates, and scholars concerning practices involved in genetic counseling more generally. In this chapter, we show that the widespread faith in informed consent is misleading and can be detrimental to (...) the practice of genetic counseling as guided by concerns of justice and equity. We proceed in two steps. First, we explain how informed consent is flawed as a practical concept. Second, we show how the inadequacy of informed consent illuminates the animating core of disability critiques of genetic counseling: the issue of ableism. We argue that the problem of ableism cannot be solved with informed consent because it is not merely a problem of information, but also of epistemic frameworks. We suggest that what we call critically informed consent is better suited to move genetic counseling from being aware of the problem of ableism to becoming actively anti-ableist. (shrink)

Individuals suffering from anorexia-nervosa experience dysmorphic perceptions of their body and desire to act on these perceptions by refusing food. In some cases, anorexics want to refuse food to the point of death. In this paper, I answer this question: if an anorexic, A, wants to refuse food when the food would either be life-saving or prevent serious bodily harm, can A’s refusal be valid? I argue that there is compelling reason to think that anorexics can validly refuse food, even (...) in these extreme circumstances. (shrink)

The importance of medical confidentiality is obvious to anyone who has ever been a patient, and protecting private information about patients is one of the key responsibilities of healthcare professionals. However, maintaining the confidentiality of patients who are incarcerated in prisons poses several ethical challenges. In this chapter we explain the importance of confidentiality in general, and the dilemmas that sometimes face doctors with regard to it, before describing some of the specific difficulties faced by prison doctors. Although healthcare professionals (...) working in prisons have the same duty to respect confidentiality as those working in the wider community, the conflicts of interest caused by their dual loyalty to prisoners and to prison authorities can make it very difficult to strike the right balance between respecting confidentiality and protecting prisoners and third parties. We illustrate some of the dilemmas facing prison doctors with a series of case discussions before providing suggestions for resolving these difficult situations. Ideally, a combination of great ethical and legal sensitivity on the part of healthcare professionals and general respect for prisoners’ rights on the part of other prison staff enables most issues to be resolved without the need to compromise patients’ confidentiality. (shrink)

It is well known that prisoners’ human rights are often violated. In this chapter we examine whether guidelines can be effective in preventing such violations and in helping physicians resolve the significant conflicts of interest that they often face in trying to protect prisoners’ rights. We begin by explaining the role of clinical and ethical guidelines outside prisons, in the context of healthcare for non-incarcerated prisoners, and then the specific role of such guidelines within prisons, where the main concerns are (...) ensuring respect for the principle of equivalence of care, and for a prisoner patient’s autonomy in health care decisions. After reviewing and analysing various national and international guidelines, we review the literature and assess whether the good practices set out in these guidelines actually translate into changes in professional behaviour and consequent benefits for prisoners. It emerges that physicians both outside and within prisons tend to be insufficiently familiar with the relevant guidelines, and that they too infrequently use the guidance to make decisions, preferring instead to use personal codes of conduct. Guidelines designed specifically for the prison context are important to ensure equivalence of care and should be better known by health care personnel and other professional groups working in prison. Further guidelines should be developed that describe challenging situations and provide concrete guidance as to how to deal with them. (shrink)

Informed consent, when given by proxy, has limitations: chiefly, it must be made in the interest of the patient. Here we critique the standard approach to parental consent, as present in Canada and the UK. Parents are often asked for consent, but are not given the authority to refuse medically beneficial treatment in many situations. This prompts the question of whether it is possible for someone to consent if they cannot refuse. We present two alternative and philosophically more consistent frameworks (...) for paediatric proxy consent. The first allows meaningful consent (parents may say ‘yes’ or ‘no’ to treatment), provided that parents are medically informed/competent and intend the health and well-being of their child. In the second solution, medical practitioners or the state consent for treatment, with parents only being consulted to help give insight to the child’s circumstances. While we contend that either of these two options is superior to the insincerity of the present paradigm, we suggest that the first solution is preferable. (shrink)

Consent, on a standard theoretical framework, is a way of giving permission or waiving a right. Dougherty’s book is about the ‘scope’ of consent: which acts are permitted by a given act of consent? Along the way, Dougherty offers a view about what consent consists in and why it does its morally transformative work.The book is an exemplar of careful analytic philosophy. Philosophers working on consent in that tradition will find it essential reading. Following are more specific reactions that will, (...) I hope, convey a more specific sense of the book, and also engage and critique it and the tradition it exemplifies.1. Consent versus due diligenceWhat role should consent play in our ethical theorizing? There is a temptation in some discussions — especially of sexual consent — to try to do almost all of our ethics in terms of consent. One recognizes that an action is morally bad, and posits a new constraint on consent to explain how it’s nonconsensual, thereby explaining its badness. (shrink)

Background -/- Innovative neurosurgical treatments present a number of known risks, the natures and probabilities of which can be adequately communicated to patients via the standard procedures governing obtaining informed consent. However, due to their novelty, these treatments also come with unknown risks, which require an augmented approach to obtaining informed consent. -/- Objective -/- This paper aims to discuss and provide concrete procedural guidance on the ethical issues raised by serious unexpected complications of novel deep brain stimulation treatments. -/- (...) Approach -/- We illustrate our analysis using a case study of the unexpected development of recurrent stereotyped events in patients following the use of deep brain stimulation (DBS) to treat severe chronic pain. Examining these unexpected complications in light of medical ethical principles, we argue that serious complications of novel DBS treatments do not necessarily make it unethical to offer the intervention to eligible patients. However, the difficulty the clinician faces in determining whether the intervention is in the patient's best interests generates reasons to take extra steps to promote the autonomous decision making of these patients. -/- Conclusion and recommendations -/- We conclude with clinical recommendations, including details of an augmented consent process for novel DBS treatment. (shrink)

Rapidly advancing technologies in the field of extracorporeal cardiopulmonary resuscitation (ECPR) have presented a new challenge in accurate neuroprognostication following cardiac arrest. Determination of brain state informs the prognostic picture and allows providers to begin effective communication regarding likelihood of meaningful neurological recovery as defined by patients or family members. The evolving role of sedation during ECPR and its impacts on ethical tension in decision-making is reviewed. Work surrounding the advancing field of neuroprognostication after cardiac arrest and hypothermia is summarized (...) and implications of premature withdrawal of life-sustaining treatments are discussed. Advances that improve predictive value for neurological recovery are utilized in affirming and discussing the implications for end-of-life wishes of individuals in the setting of intensive resuscitative therapies. (shrink)

Suri and Gross's 2022 connectionist emotion theory can be considered as one version of a family of theories known as network theories of emotion. It presents similarities and differences with older...

The capacity to designate a surrogate is not simply another kind of medical decision-making capacity. A patient with DMC can express a preference, understand information relevant to that choice, appreciate the significance of that information for their clinical condition, and reason about their choice in light of their goals and values. In contrast, a patient can possess the CDS even if they cannot appreciate their condition or reason about the relative risks and benefits of their options. Patients who lack DMC (...) for many or most kinds of medical choices may nonetheless possess the CDS, particularly since the complex means-ends reasoning required by DMC is one of the first capacities to be lost in progressive cognitive diseases. That is, patients with significant cognitive decline or mental illness may still understand what a surrogate does, express a preference about a potential surrogate, and be able to provide some kind of justification for that selection. Moreover, there are many legitimate and relevant rationales for surrogate selection that are inconsistent with the reasoning criterion of DMC. Unfortunately, many patients are prevented from designating a surrogate if they are judged to lack DMC. When such patients possess the CDS, this practice is ethically wrong, legally dubious and imposes avoidable burdens on healthcare institutions. (shrink)

According to what Douglas calls ‘the consent requirement’, neuro-correctives can only permissibly be provided with the valid consent of the offender who will undergo the intervention. Some of those who endorse the consent requirement have claimed that even though the requirement prohibits the imposition of mandatory neurocorrectives on criminal offenders, it may yet be permissible to offer offenders the opportunity to consent to undergoing such an intervention, in return for a reduction to their penal sentence. I call this the neurocorrective (...) offer. In this chapter I consider the coercion-based objection to the neurocorrective offer, which claims that offenders cannot provide valid consent to undergoing a neurocorrective on the basis of this offer because it is inherently coercive. Having outlined early formulations of this argument, I point out that there are in fact two different versions of this objection, which appeal to different understandings of the concepts of coercion, consent and voluntariness. (shrink)

Under the current Mental Health Act of England and Wales, it is lawful to perform deep brain stimulation in the absence of consent and independent approval. We argue against the Care Quality Commission's preferred strategy of addressing this problematic issue, and offer recommendations for deep brain stimulation-specific provisions in a revised Mental Health Act.

Deep Brain Stimulation is currently being investigated as an experimental treatment for patients suffering from treatment-refractory AN, with an increasing number of case reports and small-scale trials published. Although still at an exploratory and experimental stage, initial results have been promising. Despite the risks associated with an invasive neurosurgical procedure and the long-term implantation of a foreign body, DBS has a number of advantageous features for patients with SE-AN. Stimulation can be fine-tuned to the specific needs of the particular patient, (...) is relatively reversible, and the technique also allows for the crucial issue of investigating and comparing the effects of different neural targets. However, at a time when DBS is emerging as a promising investigational treatment modality for AN, lesioning procedures in psychiatry are having a renaissance. Of concern it has been argued that the two kinds of interventions should instead be understood as rivaling, yet “mutually enriching paradigms” despite the fact that lesioning the brain is irreversible and there is no evidence base for an effective target in AN. We argue that lesioning procedures in AN are unethical at this stage of knowledge and seriously problematic for this patient group, for whom self-control is particularly central to wellbeing. They pose a greater risk of major harms that cannot justify ethical equipoise, despite the apparent superiority in reduced short term surgical harms and lower cost. (shrink)

Journal of Applied Philosophy, EarlyView.

Voluntariness is a necessary condition of valid consent. But determining whether a person consented voluntarily can be difficult, especially when people are subjected to coercion or manipulation, placed in a situation with no acceptable alternative other than to consent to something, or find themselves in an abusive relationship. This book presents a novel view on the voluntariness of consent, especially medical consent, which the author calls Interpersonal Consenter-Consentee Justification (ICCJ). According to this view, consent is voluntary if and only if (...) the process by which it has been obtained aligns with principles of interpersonal justification. ICCJ is distinctive because it explains voluntary consent neither as a 'psychological' concept indicative of the inner states of a person's mind (e.g. willingness or reluctance) nor as a 'circumstantial' concept indicative of a person's set of options. Rather, ICCJ explains the voluntariness of consent as an 'interpersonal' concept requiring the absence of illegitimate control within the interaction between the person giving consent and the person receiving it. In so doing, ICCJ further develops the notion of interpersonal justification, known from contractualist theories in moral philosophy, and introduces it to the debate on consent. The author employs a top-down approach, defending ICCJ's key characteristics on the basis of general theoretical arguments, as well as a bottom-up approach, supporting ICCJ in its application to clinical challenges such as nudging and manipulation, living organ donation, and clinical trials. Voluntary Consent will appeal to researchers and advanced students in normative ethics, bioethics, philosophy of law, behavioural psychology, and medicine. (shrink)

The reductionist/anti-reductionist debate about testimonial justification (and knowledge) can be taken to collapse into a controversy about two kinds of underlying monitoring mechanism. The nature and structure of this mechanism remains an enigma in the debate. We suggest that the underlying monitoring mechanism amounts to emotion-based stereotyping. Our main argument in favor of the stereotype hypothesis about testimonial monitoring is that the underlying psychological mechanism responsible for testimonial monitoring has several conditions to satisfy. Each of these conditions is satisfied by (...) our “hot” stereotypical capacities. Intergroup emotions play a key role here. Intergroup emotions inform the agent about which candidate stereotype is better suited to the current situation. Emotions serve as evidence that makes a certain stereotype and its particular profile of features more or less expected. (shrink)

Research on salesperson creativity remains as one of the most under-researched topics in the sales literature despite the evidence that encouraging creativity in the sales domain is a source of competitive advantage. This paper aims to fill this research gap by exploring the influence of perceived ethical climate on salesperson creative performance, paying special attention to the role that emotions play in this process. Data provided by 176 supervisor–salesperson dyads confirm that the trust/responsibility dimension of an ethical climate is positively (...) related to salesperson creative selling by increasing salespeople's organizational pride. Similarly, the perception of unethical selling practices negatively affects salesperson organizational pride, reducing the expression of creative behaviors. Moreover, the negative effect of unethical selling practices on creative performance is stronger (more negative) when salespeople's identification with an organization increases. Managerial implications and future research directions are also addressed. (shrink)

Drawing from the grounded theory of work engagement, this research aims to explore three essential yet previously unexamined pathways—work meaningfulness, emotion regulation, and job competence in simultaneously transmitting the effects of mindfulness training to employee experience of work engagement. We employed a six-wave quasi-experimental design and recruited 129 employees to participate in the quasi-experiment, and tested our simultaneous mediating models using the structural equation modeling. Results showed that mindfulness facilitated employees’ work meaningfulness, emotion regulation, and job competence, which in turn (...) enhanced employee work engagement. By doing so, we add to the mindfulness literature by showing that the three essential psychological states are important machanims that link mindfulness to work engagement. Practicially, this research reveals that mindfulness training is an effective tool to influence employees’ psychological states, which ultimately develop their work engagement in the workplace. (shrink)

This commentary defends 3 arguments for changing the label of levonorgestrel-based emergency contraception (LNG EC) so that it no longer supports the possibility of a mechanism of action after fertilization. First, there is no direct scientific evidence confirming any postfertilization mechanisms. Second, despite the weight of evidence, there is still widespread public misunderstanding over the mechanism of LNG EC. Third, this FDA label is not a value-free claim, but instead it has functioned like a political tool for reducing contraceptive access. (...) The label is laden with antiabortion values (even though EC is contraception, not abortion), and it imposes these values on potential users, resulting in barriers to access such as with Burwell v. Hobby Lobby. These 3 arguments together provide scientific, social, and ethical grounds for the FDA to take the initiate in changing Plan B's drug label. (shrink)

Regarding the appropriateness of deception in clinical practice, two (apparently conflicting) claims are often emphasised. First, that ‘clinicians should not deceive their patients.’ Second, that deception is sometimes ‘in a patient’s best interest.’ Recently, Hardman has worked towards resolving this conflict by exploring ways in which deceptive and non-deceptive practices extend beyond consideration of patients’ beliefs. In short, some practices only seem deceptive because of the (common) assumption that non-deceptive care is solely aimed at fostering true beliefs. Non-deceptive care, however, (...) relates to patients’ non-doxastic attitudes in important ways as well. As such, Hardman suggests that by focusing on belief alone, we sometimes misidentify non-deceptive care as ‘deceptive’. Further, once we consider patients’ beliefs and non-doxastic attitudes, identifying cases of deception becomes more difficult than it may seem. In this essay, I argue that Hardman’s reasoning contains at least three serious flaws. First, his account of deception is underdeveloped, as it does not state whether deception must be intentional. The problem is that if intention is not required, absurd results follow. Alternatively, if intention is required, then identifying cases of deception will be much easier (in principle) than Hardman suggests. Second, Hardman mischaracterises the ‘inverse’ of deceptive care. Doing so leads to the mistaken conclusion that common conceptions of non-deceptive care are unjustifiably narrow. Third, Hardman fails to adequately separate questions about deception from questions about normativity. By addressing these issues, however, we can preserve some of Hardman’s most important insights, although in a much simpler, more principled way. (shrink)

In Responsible Brains, Hirstein, Sifferd and Fagan apply the language of cognitive neuroscience to dominant understandings of criminal responsibility in criminal law theory. The Authors make a compelling case that, under such dominant understandings, criminal responsibility eventually ‘translates’ into a minimal working set of executive functions that are primarily mediated by the frontal lobes of the brain. In so arguing, the Authors seem to unquestioningly accept the law’s view of the “responsible person” as a mixture of cognitive capacities and mechanisms—thereby (...) leaving aside other fundamental aspects of individuals’ human agency. This commentary article offers a critique of the Authors’ rationalist and individualist approach. The critique can be summarized through the following claim: We humans, as responsible beings, are more than our executive functions. This claim articulates through four main points of discussion: role of emotions in moral judgments and behavior; executive functions and normative criteria for legal insanity; impact of adverse situational factors on executive functions; Authors’ account of punishment and, especially, rehabilitation. (shrink)

How should we respond to patients who do not wish to take on the responsibility and burdens of making decisions about their own care? In this paper, we argue that existing models of decision-making in modern healthcare are ill-equipped to cope with such patients and should be supplemented by an “appointed fiduciary” model where decision-making authority is formally transferred to a medical professional. Healthcare decisions are often complex and for patients can come at time of vulnerability. While this does not (...) undermine their capacity, it can be excessively burdensome. Most existing models of decision-making mandate that patients with capacity must retain ultimate responsibility for decisions. An appointed fiduciary model provides a formalized mechanism through which those few patients who wish to defer responsibility can hand over decision-making authority. By providing a formal structure for deferring to an appointed fiduciary, the confusions and risks of the informal transfers that can occur in practice are avoided. Finally, we note how appropriate governance and law can provide safeguards against risks to the welfare of patients and medical professionals. -/- . (shrink)

The role emotions play in the dynamics of cultural phenomena has long been neglected. The collection of articles recently published in Emotion Review provides an important first step into this necessary endeavor. In this commentary, we discuss this contribution by emphasizing the role epistemological parsimony should play in the future of this research agenda. The cultural behavior and emotions of chimpanzees is taken as reference.

In 2016, this Journal published an article by Rob Lawlor1 on what we might call the acceptance-refusal asymmetry in competence requirements. This is the view that there can be cases in which a patient is sufficiently competent to accept a treatment ( viz., to give consent to it), but not sufficiently competent to refuse it ( viz., to withhold consent to it). Though the main purpose of Lawlor’s paper was to distinguish this asymmetry from various other asymmetries with which it (...) has sometimes been confused,1 Lawlor also presented a brief case in favour of it. Developing an earlier argument of Ian Wilks’,2 3 Lawlor argued that, when the risks associated with refusing a treatment are graver than those associated with accepting it, a higher level of competence may be required to refuse a treatment than to accept it. This claim could have important implications for the law, since determinations of competence often play a central role in determining the lawfulness of refusing or imposing a treatment (eg, in England and Wales under the Mental Capacity Act 2005). Indeed, the acceptance-refusal asymmetry in competence requirements, or something close to it, has played an important role in court judgments.2 However, Lawlor himself suggests that his conclusion will have practical implications only in a narrow range of cases.3 In this issue, Pickering, Giles Newton-Howes and Simon Walker (henceforth ‘the authors’) respond to Lawlor’s piece.4 They deny that competence requirements should depend on the level of risk associated with a decision, and thus that there is any basis for the acceptance-refusal asymmetry in competence requirements. Part of the authors’ argument involves contesting the way in which Lawlor uses cases to support his view. In one case cited by Lawlor—and drawn from Wilks—we are invited to consider a whether …. (shrink)

This paper introduces a novel form of pragmatic encroachment: one that makes a difference to the status of emotion rather than the status of belief. I begin by isolating a distinctive standard in terms of which we can evaluate emotion – one sometimes called “subjective fittingness,” “epistemic justification,” or “warrant.” I then show how this standard for emotion could face a kind of pragmatic encroachment importantly similar to the more familiar encroachment on epistemic standards for belief. Encroachment on warranted emotion (...) is a striking proposal that deserves attention. In fact, there are good reasons to think that encroachment on warranted emotion deserves to be considered the default view for those who already accept pragmatic encroachment on the epistemic status of belief. I support this parity claim by arguing for a principle that establishes a limited coordination between the conditions that warrant emotion and the conditions that justify belief. (shrink)

The pelvic exam is used to assess the health of female reproductive organs and so involves digital penetration by a physician. However, it is common practice for medical students to acquire experience in administering pelvic exams by performing them on unconscious patients without prior authorization. In this article, we argue that such unauthorized pelvic exams (UPEs) are sexual assault. Our argument is simple: in any other circumstance, unauthorized digital penetration amounts to sexual assault. Since there are no morally significant differences (...) between UPEs and other instances of digital penetration, UPEs are sexual assault. So, insofar as one is against sexual assault, one should be against UPEs. (shrink)

In response to the COVID-19 pandemic, large-scale research and pharmaceutical regulatory processes have proceeded at a dramatically increased pace with new and effective, evidence-based COVID-19 interventions rapidly making their way into the clinic. However, the swift generation of high-quality evidence and the efficient processing of regulatory authorisation have given rise to more specific and complex versions of well-known research ethics issues. In this paper, we identify three such issues by focusing on the authorisation of Molnupiravir, a novel antiviral medicine aimed (...) at reducing the ability of SARS-CoV-2 to multiply in the body, for clinical use by the National Health Service in England and the concomitant testing of Molnupiravir through the large-scale PANORAMIC randomised control trial. By analysing the ways in which the authorisation and clinical use of Molnupiravir complicate standard approaches to clinical equipoise, standard of care, and participant consent in the PANORAMIC randomised control trial we will explain some of ethical implications for clinical trials that aim to study the efficacy and safety of new COVID-19 and other therapeutics when conditional authorisation has already been granted and when such treatments have already been made available to patients by national health providers. (shrink)

The standard account of informed consent has recently met serious criticism, focused on the mismatch between its implications and widespread intuitions about the permissibility of conducting research and providing treatment under conditions of partial knowledge. Unlike other critics of the standard account, we suggest an account of the relations between autonomy, ignorance, and valid consent that avoids these implausible implications while maintaining the standard core idea, namely, that the primary purpose of the disclosure requirement of informed consent is to prevent (...) autonomy-undermining ignorance. The problem with the standard account, we argue, is that it fails to distinguish between different forms of ignorance–in particular, error and suspending ignorance–that have very different effects on individuals’ ability to provide valid consent. While error often undermines our ability to provide valid consent, suspending ignorance, we argue, does not. Once the moral weight of this distinction is appreciated, it becomes apparent that valid informed consent requires far less knowledge than suggested by the standard account. (shrink)

In the debates regarding the ethics of human organoid biobanking, the locus of donor autonomy has been identified in processes of consent. The problem is that, by focusing on consent, biobanking processes preclude adequate engagement with donor autonomy because they are unable to adequately recognise or respond to factors that determine authentic choice. This is particularly problematic in biobanking contexts associated with organoid research or the clinical application of organoids because, given the probability of unforeseen and varying purposes for which (...) a donor’s organoids could be employed and given the different ways in which a donor can relate to her biospecimens, a donor can value her organoids differently in different contexts and her reasons for autonomously permitting use of her cells and tissues in one case may not support an autonomous decision in another. In response, this paper has three aims: firstly, to make the case for why organoid biobanks ought to respect donor autonomy conceived as authentic choice; secondly, to explore the autonomy-respecting limits of established and widely prevalent models of biobank consent; and thirdly, to propose certain conditions that organoid biobanks ought to support or facilitate in order to respect donor autonomy. (shrink)

Phenomenology gives rise to certain ontological considerations that have far-reaching implications for standard conceptions of patient autonomy in medical ethics, and, as a result, the obligations of and to patients in clinical decision-making contexts. One such consideration is the phenomenological reduction in classical phenomenology, a core feature of which is the characterisation of our primary experiences as immediately and inherently meaningful. This paper builds on and extends the analyses of the phenomenological reduction in the works of Husserl, Heidegger, and Merleau-Ponty (...) in order to identify and explain its implications for our current understanding of the principle of respect for patient autonomy and the norms of clinical decision making. (shrink)

Over the last 25 years, major research in media and cultural studies has investigated the play of affect in our cultures. ‘Affect’, as a term derived from its neurophysiological and psychological origins, defines the particular movement of feeling from sensation to its attribution as an identifiable emotion. This article explores the way that ‘affect’ to emotion is being curated online by users particularly of social media as they learn to structure how they are perceived in online culture by others. It (...) also investigates how the specific correlating of affect to emotion is one of the essential algorithmically generated activities of social media and online corporations. To discern this flow of affect and emotion, the article works to identify how this online cultural pandemic has intersected with the COVID-19 pandemic and produced a new level and intensity of affect and emotion curation as greater parts of our connected cultures are being managed and moderated by ourselves as well as governments, corporations and institutions. The neologism ‘covidiquette’ is used to describe this new form of online curation of cultures, and a further pandemic expansion of this movement of affect into attribution – transnationally, governmentally and commercially. Key pathways for investigating this correlation – and curation – of affect are analysed in this paper during 2020 and 2021 and the ever-presence of COVID-19 and its unique capacity to produce a proliferation of sharing, connection and – critically – surveillance. (shrink)

Machine intelligence already helps medical staff with a number of tasks. Ethical decision-making, however, has not been handed over to computers. In this proof-of-concept study, we show how an algorithm based on Beauchamp and Childress’ prima-facie principles could be employed to advise on a range of moral dilemma situations that occur in medical institutions. We explain why we chose fuzzy cognitive maps to set up the advisory system and how we utilized machine learning to train it. We report on the (...) difficult task of operationalizing the principles of beneficence, non-maleficence and patient autonomy, and describe how we selected suitable input parameters that we extracted from a training dataset of clinical cases. The first performance results are promising, but an algorithmic approach to ethics also comes with several weaknesses and limitations. Should one really entrust the sensitive domain of clinical ethics to machine intelligence? (shrink)

Goal: To assess public knowledge and attitudes towards the family’s role in deceased organ donation in Europe. -/- Methods: A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing either knowledge or attitudes by the public towards the consent system, including the involvement of the family in the decision-making process, for post-mortem organ retrieval. Screening and data collection (...) were performed by two or more independent reviewers for each record. -/- Results: Of the 1482 results, 467 studies were assessed in full-text form, and 33 were included in this synthesis. When the deceased has not expressed any preference, a majority of the public support the family's role as a surrogate decision-maker. When the deceased expressly consented, the respondents' answers depend on whether they see themselves as potential donors or as a deceased's next-of-kin. Answers also depend on the relationship between the deceased and the decision-maker(s) within the family, and on their ethnic or cultural background. -/- Conclusions: Public views on the authority of the family in organ donation decision-making require further research. A common conceptual framework and validated well-designed questionnaires are needed for future studies. The findings should be considered in the development of Government policy and guidance regarding the role of families in deceased organ donation. (shrink)

Medicines and medical devices containing animal-derived ingredients are frequently used on patients without their informed consent, despite a significant proportion of patients wanting to know if an animal-derived product is going to be used in their care. Here, I outline three arguments for why this practice is wrong. First, I argue that using animal-derived medical products on patients without their informed consent undermines respect for their autonomy. Second, it risks causing nontrivial psychological harm. Third, it is morally inconsistent to respect (...) patients’ dietary preferences and then use animal-derived medicines or medical devices on them without their informed consent. I then address several anticipated objections and conclude that the continued failure to address this issue is an ethical blind spot that warrants applying the principles of respect for autonomy and informed consent consistently. There are no data in this work. (shrink)

The disruptions of life in late modernity render self-identity fragile. Consequently, individuals must reflexively manage their emotions and periodically reinvent themselves to maintain a coherent narrative of the self. The rise of psychology as a discursive regime across the 20th century, and its intersections with a plethora of wellness industries, has furnished a new language of selfhood and greater public attention to emotions and personal narratives of suffering. Celebrities, who engage in public identity work to ensure their continued relatability, increasingly (...) provide models for navigating emotional trials. In this article we explore representations of selfhood and identity work in celebrity interviews. We focus on media veterans Nigella Lawson and Ruby Wax, both of whom are skilled in re-storying the self after personal crises. We argue that interpretive capital as a peculiarly late modern resource confers emotional advantages and life chances on individuals as they navigate upheavals, uncertainties, and intimate dilemmas. (shrink)

Borderline personality disorder is a complex psychopathological phenomenon. It is usually thought to consist in a vast instability of different aspects that are central to our experience of the world, and to manifest as “a pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity” [American Psychiatric Association, 2013, p. 663]. Typically, of the instability triad—instability in self, affect and emotion, and interpersonal relationships—only the first two are described, examined, and conceptualized from an experiential point of view. (...) In this context, disorders of self have often motivated analyses of self-experience and the sense of self, affective disorders have been frequently considered in the light of emotional experience and its phenomenological structure. Patterns in the phenomenology of social experience have found comparatively little traction when it comes to the conceptualization of the interpersonal disturbances in borderline. In this paper, I argue that interpersonal instability in borderline consists in much more than fragile and shifting relationships but, most importantly, also involves certain styles in experiencing others. These styles, I suggest, may play an explanatory role for the borderline-typical patterns of interpersonal turmoil and so deserve more attention. To better describe and understand these styles, I explore the phenomenological structure of borderline affective instability and discuss the implications it might have for how a person experiences and relates to other people. Considering core aspects of borderline affective instability, such as alexithymia, emotional contagion, emotion dysregulation, and chronic emptiness, I propose borderline can be interpreted as a disturbance of interaffective exchange, which gives rise to certain ways of experiencing others that imply a social impairment. (shrink)

Scientists have the ability to influence policy in important ways through how they present their results. Surprisingly, existing codes of scientific ethics have little to say about such choices. I propose that we can arrive at a set of ethical guidelines to govern scientists’ presentation of information to policymakers by looking to bioethics: roughly, just as a clinician should aim to promote informed decision-making by patients, a scientist should aim to promote informed decision-making by policymakers. Though this may sound like (...) a natural proposal, I show it offers guidance that conflicts with standard scientific practices. I conclude by considering one cost of the proposal: that it would prevent scientists from acting as advocates in a way that is currently common in certain fields. I accept that the proposal would restrict scientists’ political advocacy rights, but argue that the benefits of adopting it — promoting democratic governance — justify the restriction. (shrink)