In recent years, an old challenge to informed consent has been rediscovered: the challenge of ignorance. Several authors argue that due to the presence of irreducible ignorance in certain treatments, giving informed consent to these treatments is not possible. The present paper examines in what ways ignorance is believed to prevent informed consent and which treatments are affected by that. At this, it becomes clear that if the challenge of ignorance truly holds, it poses a major problem to informed consent. (...) The paper argues, however, that from both an empirical and a theoretical point of view, it is not convincing that ignorance prevents informed consent. Still, it seems important that the presence of irreducible ignorance is openly discussed during the informed consent process. (shrink)

Personal autonomy is often lauded as a key value in contemporary Western bioethics. Though the claim that there is an important relationship between autonomy and rationality is often treated as uncontroversial in this sphere, there is also considerable disagreement about how we should cash out the relationship. In particular, it is unclear whether a rationalist view of autonomy can be compatible with legal judgments that enshrine a patient's right to refuse medical treatment, regardless of whether the reasons underpinning the choice (...) are known and rational, or indeed whether they even exist. Jonathan Pugh brings recent philosophical work on the nature of rationality to bear on the question of how we should understand personal autonomy in contemporary bioethics. In doing so, he develops a new framework for thinking about the concept of autonomy, one that is grounded in an understanding of the different roles that rational beliefs and rational desires have to play in it. Pugh's account allows for a deeper understanding of d the relationship between our freedom to act and our capacity to decide autonomously. His rationalist perspective is contrasted with other prominent accounts of autonomy in bioethics, and the revisionary implications it has for practical questions in biomedicine are also outlined. (shrink)

The notion of respect for autonomy dominates bioethical discussion, though what qualifies precisely as autonomous action is notoriously elusive. In recent decades, the notion of autonomy in medical contexts has often been defined in opposition to the notion of autonomy favoured by theoretical philosophers. Where many contemporary theoretical accounts of autonomy place emphasis on a condition of “authenticity”, the special relation a desire must have to the self, bioethicists often regard such a focus as irrelevant to the concerns of medical (...) ethics, and too stringent for use in practical contexts. I argue, however, that the very condition of authenticity that forms a focus in theoretical philosophy is also essential to autonomy and competence in medical ethics. After tracing the contours of contemporary authenticity-based theories of autonomy, I consider and respond to objections against the incorporation of a notion of authenticity into accounts of autonomy designed for use in medical contexts. By looking at the typical problems that arise when making judgments concerning autonomy or competence in a medical setting, I reveal the need for a condition of authenticity—as a means of protecting choices, particularly high-stakes choices, from being restricted or overridden on the basis of intersubjective disagreement. I then turn to the treatment of false and contestable beliefs, arguing that it is only through reference to authenticity that we can make important distinctions in this domain. Finally, I consider a potential problem with my proposed approach; its ability to deal with anorexic and depressive desires. (shrink)

Population obesity and associated morbidities pose significant public health and economic burdens in the United Kingdom, United States, and globally. As a response, public health initiatives often seek to change individuals’ unhealthy behavior, with the dual aims of improving their health and conserving health care resources. One such initiative—taxes on sugar‐sweetened beverages (SSB)—has sparked considerable ethical debate. Prominent in the debate are arguments seeking to demonstrate the supposed impermissibility of SSB taxes and similar policies on the grounds that they interfere (...) with individuals’ freedom and autonomy. Commentators have often assumed that a policy intended to restrict or change private individuals’ consumption behavior will necessarily curtail freedom and, as a corollary, will undermine individuals’ autonomy with respect to their consumption choices. Yet this assumption involves a conceptual mistake. To address the misunderstanding, it’s necessary to attend to the differences between negative liberty, freedom of options, and autonomy. Ultimately, concerns about negative liberty, freedom, and autonomy do not provide strong grounds for opposing SSB taxes. (shrink)

A psychedelic renaissance is currently taking place in mental healthcare. The number of psychedelic-assisted therapy trials is growing steadily, and some countries already grant psychiatrists special permission to use psychedelics in non-research contexts under certain conditions. These clinical advances must be accompanied by ethical inquiry. One pressing ethical question involves whether patients can even give informed consent to psychedelic-assisted therapy: the treatment’s transformative nature seems to block its assessment, suggesting that patients are unable to understand what undergoing psychedelic-assisted therapy actually (...) means for them and whether it aligns with their values. The present paper argues that patients often have sufficient knowledge to give informed consent because they know that they want to change their negative status quo and that psychedelic-assisted therapy offers an effective way to do so. Accordingly, patients can understand what the transformative nature of psychedelic-assisted therapy means for them and a make a value-aligned choice even if they are unable to anticipate the manifestation of a psychedelic experience. (shrink)

Despite the fact that psychedelics were proscribed from medical research half a century ago, recent, early-phase trials on psychedelics have suggested that they bring novel benefits to patients in the treatment of several mental and substance use disorders. When beneficial, the psychedelic experience is characterized by features unlike those of other psychiatric and medical treatments. These include senses of losing self-importance, ineffable knowledge, feelings of unity and connection with others and encountering ‘deep’ reality or God. In addition to symptom relief, (...) psychedelic experiences often lead to significant changes in a patient’s personality and worldview. Focusing on the case of psilocybin, we argue that the peculiar features of psychedelics pose certain novel risks, which warrant an enhanced informed consent process–one that is more comprehensive than what may be typical for other psychiatric medications. We highlight key issues that should be focused on during the consent process and suggest discussion prompts for enhanced consent in psychedelic psychiatry. Finally, we respond to potential objections before concluding with a discussion of ethical considerations that will arise as psychedelics proceed from highly controlled research environments into mainstream clinical psychiatry. (shrink)

Population-level biomedical research has become crucial to the health system’s ability to improve the health of the population. This form of research raises a number of well-documented ethical concerns, perhaps the most significant of which is the inability of the researcher to obtain fully informed specific consent from participants. Two proposed technical solutions to this problem of consent in large-scale biomedical research that have become increasingly popular are meta-consent and dynamic consent. We critically examine the ethical and practical credentials of (...) these proposals and find them lacking. We suggest that the consent problem is not solved by adopting a technology driven approach grounded in a notion of ‘specific’ consent but by taking seriously the role of research governance in combination with broader conceptions of consent. In our view, these approaches misconstrue the rightful location of authority in the way in which population-level biomedical research activities are structured and organized. We conclude by showing how and why the authority for determining the nature and shape of choice making about participation ought not to lie with individual participants, but rather with the researchers and the research governance process, and that this necessarily leads to the endorsement of a fully articulated broad consent approach. (shrink)

ZusammenfassungIm Blick auf ein Recht auf assistierten Suizid ist nicht nur umstritten, ob es ein solches Recht gibt, es ist auch umstritten, worauf ein solches Recht denn ein Recht wäre. Der vorliegende Artikel versucht deutlich zu machen, dass das, worum es in dieser Diskussion um den selbstbestimmten Suizid geht, die Frage ist, was Entscheidungen von Menschen achtungswürdig macht. Der Artikel plädiert für eine Idee von Achtungswürdigkeit, für welche die selbstbestimmte Ausübung von Rechten über sich selbst leitend ist, eine Idee, die (...) auch in unserer Rechtspraxis wirksam ist. Dabei legen achtungswürdige Entscheidungen fest, was getan werden darf, nicht aber was getan werden soll. (shrink)

Some have objected to human enhancement on the grounds that it violates the autonomy of the enhanced. These objections, however, overlook the interesting possibility that autonomy itself could be enhanced. How, exactly, to enhance autonomy is a difficult problem due to the numerous and diverse accounts of autonomy in the literature. Existing accounts of autonomy enhancement rely on narrow and controversial conceptions of autonomy. However, we identify one feature of autonomy common to many mainstream accounts: reasoning ability. Autonomy can then (...) be enhanced by improving people’s reasoning ability, in particular through cognitive enhancement; given how valuable autonomy is usually taken to be, this gives us extra reason to pursue such cognitive enhancements. Moreover, autonomy-based objections will be especially weak against such enhancements. As we will argue, those who are worried that enhancements will inhibit people’s autonomy should actually embrace those enhancements that will improve autonomy. (shrink)

This paper describes the concept of a do-gooder: a person who does unwanted good. It illustrates why doing-good is a problem and argues that patients should not be compelled to do what is best. It shows the ways in which doctors covertly do-good and offers a critique of these. The discussion focuses on the example of the treatment of patients who attempt suicide.

This paper argues that doctors ought to make all things considered value judgments about what is best for their patients. It illustrates some of the shortcomings of the model of doctor as 'fact-provider'. The 'fact-provider' model fails to take account of the fact that practising medicine necessarily involves making value judgments; that medical practice is a moral practice and requires that doctors reflect on what ought to be done, and that patients can make choices which fail to express their autonomy (...) and which are based on mistaken judgments of value. If doctors are properly to respect patient autonomy and to function as moral agents, they must make evaluations of what their patients ought to do, all things considered. This paper argues for 'rational, non-interventional paternalism'. This is a practice in which doctors form conceptions of what is best for their patients and argue rationally with them. It differs from old-style paternalism in that it is not committed to doing what is best. (shrink)

In her excellent and comprehensive article, Friesen argues that utilising personal responsibility in healthcare is problematic in several ways: it is difficult to ascribe responsibility to behaviour; there is a risk of prejudice and bias in deciding which behaviours a person should be held responsible for; it may be ineffective at reducing health costs. In this short commentary, I will elaborate the critique of personal responsibility in health but suggest one way in which it could be used ethically. In doing (...) so, I will introduce the concepts of reasonable risk and golden opportunity. I previously argued that it is both difficult to disentangle responsibility and that we risk prejudice and bias in singling out behaviours that are socially disapproved of.1 So I am sympathetic to Friesen’s concerns. I also discussed another way in which ascribing personal responsibility for health is problematic which Friesen does not discuss and which, in my view, is the most concerning and further supports her arguments. It represents a back door assault on liberalism and neutrality towards concepts of the good life. Even if one were to accurately and in an unbiased way divine the personal contribution to disease, the greatest problem would remain: those who voluntarily take on risk would be penalised. That is, such a system would be risk-averse. Those lives which avoided risk would be prioritised, while those who chose to take on risky activities in their conception of the good life would be penalised. Yet risk is necessary, both for the good life, and social progress. Columbus, Edmund Hilary, Florence Nightingale, Ernest Hemingway and countless monumental figures in human history took risks in order to achieve something great. Should we aim for a society of trembling, teetotalling health nuts? Surely that prospect is horrific. It is horrific because it elevates health …. (shrink)

Advance directives are propagated as instruments to maintain patients’ autonomy in case they can no longer decide for themselves. It has been never been examined whether patients’ and healthy persons themselves are inclined to adhere to these documents. Patients’ and healthy persons’ views on whether instructions laid down in advance directives should be followed because that is (or is not) “the right thing to do”, not because one is legally obliged to do so, were studied and compared with that of (...) medical staff. Method: Vignette study presenting five cases. Cancer patients, healthy persons, nursing staff and physicians (n = 100 in each group) were interviewed. An adherence score was calculated (maximum value 5). The adherence score is found to be low in all groups, yet lowest in patients (1.55; standard deviation 1.13) and healthy controls (1.60; 1.37). The scores are significantly different between nursing staff on the one hand and patients and healthy controls on the other (p < 0.005 and p < 0.05, respectively), and between doctors and patients (p < 0.05). Interviewees who want these documents to be followed tend to live alone and to have already written an advance directive. Conclusions: Cancer patients and healthy persons widely disregard instructions laid down in advance directives and consider them less binding than physicians and nursing staff do. Only a minority tends to adhere more to advance directives. To improve decision-making at the end of life when patients are no longer able to decide for themselves alternative concepts, such as advanced care planning, should be considered. (shrink)

Autonomy has been the central principle underpinning changes which have affected the practice of medicine in recent years. Medical education is undergoing changes as well, many of which are underpinned, at least implicitly, by increasing concern for autonomy. Some universities have embarked on graduate courses which utilize problem-based learning (PBL) techniques to teach all areas, including medical ethics. I argue that PBL is a desirable method for teaching and learning in medical ethics. It is desirable because the nature of ethical (...) enquiry is highly compatible with the learning processes which characterize PBL. But it is also desirable because it should help keep open the question of what autonomy really is, and how it should operate within the sphere of medical practice and medical education. (shrink)

There is preliminary evidence, from case reports and investigational studies, to suggest that Deep Brain Stimulation could be used to treat some patients with Anorexia Nervosa. Although this research is at an early stage, the invasive nature of the intervention and the vulnerability of the potential patients are such that anticipatory ethical analysis is warranted. In this paper, we first show how different treatment mechanisms raise different philosophical and ethical questions. We distinguish three potential mechanisms alluded to in the neuroscientific (...) literature, relating to desire, control, and emotion, respectively. We explain why the precise nature of the mechanism has important implications for the patient’s autonomy and personal identity. In the second part of the paper, we consider practical dimensions of offering DBS to patients with AN in certain cases. We first discuss some limited circumstances where the mere offering of the intervention might be perceived as exerting a degree of coercive pressure that could serve to undermine the validity of the patient’s consent. Finally, we consider the implications of potential effects of DBS for the authenticity of the patient’s choice to continue using stimulation to ameliorate their condition. (shrink)

The exponential rise in transgender self-identification invites consideration of what constitutes an ethical response to transgender individuals’ claims about how best to promote their well-being. In this paper, we argue that ‘accepting’ a claim to medical transitioning in order to promote well-being would be in the person’s best interests iff at the point of request the individual is correct in their self-diagnosis as transgender (i.e., the distress felt to reside in the body does not result from another psychological and/or societal (...) problem) such that the medical interventions they are seeking will help them to realise their preferences. If we cannot assume this—and we suggest that we have reasonable grounds to question an unqualified acceptance in some cases—then ‘acceptance’ potentially works against best interests. We propose a distinction between ‘acceptance’ and respectful, in-depth exploration of an individual’s claims about what promotes their well-being. We discuss the ethical relevance of the unconscious mind to considerations of autonomy and consent in working with transgender individuals. An inquisitive stance, we suggest, supports autonomous choice about how to realise an embodied form that sustains well-being by allowing the individual to consider both conscious and unconscious factors shaping wishes and values, hence choices. (shrink)

Notini et al 1 offer a timely addition in the wake of a significant increase in young people identifying as transgender and gender diverse. The authors focus specifically on the case of 18-year-old Phoenix’s request for ongoing puberty suppression to affirm a non-binary gender identity. A central issue raised by Phoenix’s predicament, and that I suggest we can extend to ethical consideration of requests for other types of medical intervention by binary and non-binary TGD individuals, is whether we should ‘affirm’ (...) the claims made by TGD young people about what promotes their well-being. As a clinician working with TGD young people who have undergone a range of medical interventions to align their bodies with their gender identity, my starting presumption is that it is important to respect what people think will help them: there are some TGD young people for whom, all things considered, medical interventions to affirm gender identity promote their well-being. Well-being has become an important conceptual currency in ethical debates and lies at the core of the authors’ analysis of Phoenix’s case. While the authors do not ground their argument in favour of OPS in a specific theory of well-being, welfarist considerations 2 appear to underpin …. (shrink)

Notini _et al_ 1 offer a timely addition in the wake of a significant increase in young people identifying as transgender and gender diverse. The authors focus specifically on the case of 18-year-old Phoenix’s request for ongoing puberty suppression to affirm a non-binary gender identity. A central issue raised by Phoenix’s predicament, and that I suggest we can extend to ethical consideration of requests for other types of medical intervention by binary and non-binary TGD individuals, is whether we should ‘affirm’ (...) the claims made by TGD young people about what promotes their well-being. As a clinician working with TGD young people who have undergone a range of medical interventions to align their bodies with their gender identity, my starting presumption is that it is important to respect what people think will help them: there are some TGD... (shrink)

This article advances two views on the role of evaluative judgment in clinical assessments of decision-making capacity. The first is that it is rationally impossible for such assessments to exclude judgments of the values a patient uses to motivate their decision-making. Predictably, and second, attempting to exclude such judgments sometimes yields outcomes that contain intractable dilemmas that harm patients. These arguments count against the prevailing model of assessment in common law countries—the four abilities model—which is often incorrectly advertised as being (...) value-neutral in respect of patient decision-making both by its proponents and in statute. A straightforward evaluative model of capacity assessment which wears its values on its sleeves and is biased against what are called ‘serious prudential mistakes’ avoids these rational and practical problems. (shrink)

Most anti-paternalists claim that informed and competent self-regarding choices are protected by autonomy, while ill-informed or impaired self-regarding choices are not. Joel Feinberg, among many others, argues that we can in this way distinguish impermissible “hard” paternalism from permissible “soft” paternalism. I argue that this view confronts two related problems in its treatment of ill-informed decision-makers. First, it faces a dilemma when applied to decision-makers who are responsible for their ignorance: it either permits too much, or else too little, intervention (...) to satisfy its proponents. Second, the most promising rationales in favor of the view ignore the distinction between an agent’s voluntarily bringing about some state of affairs, on the one hand, and an agent’s voluntarily assuming a risk, on the other. I conclude that a decision-maker’s ignorance is irrelevant to the permissibility of intervention on her behalf. If it is permissible to intervene in a given ill-informed choice, it would be permissible to intervene in an otherwise similar but informed choice, at least provided that intervention would produce similar benefits in both cases. This shows that we should sometimes accept straightforwardly paternalistic rationales. (shrink)

Our decision-making is often subject to framing effects: alternative but equally informative descriptions of the same options elicit different choices. When a decision-maker is vulnerable to framing, she may consent under one description of the act, which suggests that she has waived her right, yet be disposed to dissent under an equally informative description of the act, which suggests that she has not waived her right. I argue that in such a case the decision-maker’s consent is simply irrelevant to the (...) permissibility of proceeding. I then consider two alternative views. According to the first, people susceptible to framing are able to give valid consent so long as they are sufficiently informed. This suggestion, I argue, maintains an overly narrow focus on mere quantity of information to the exclusion of other choice-affecting factors. A second response, which appeals to hypothetical consent, is likewise of little use in resolving the moral problem posed by framing effects. I conclude that if susceptibility to framing undermines the validity of consent, we may have good reason to reconsider whether consent has the rights-waiving function commonly attributed to it. (shrink)

The principle of autonomy is widely recognized to be of utmost importance in bioethics; however, we argue that this principle is often misapplied when one fails to distinguish two different contexts in medicine. When a particular patient is offered treatment options, she has the ultimate say in whether to proceed with any of those treatments. However, when deciding whether a particular intervention should be regarded as a form of medical treatment in the first place, it is the medical community who (...) has the ultimate say. Some argue that particular interventions should be allowed by virtue of the fact that they are autonomously requested. But making such an argument fails to distinguish between these two contexts and misapplies the principle of autonomy, ultimately having the potential to instigate problematic changes in the practice of medicine. (shrink)

In a Ulysses contract, A gets B, at t1, to agree (i) to act at t2 in such a way that A is made to abide by her own earlier intentions and (ii) to ignore A’s later attempt to rescind the authorization. But why does A’s will at t2 lack the authority it had at t1? This article makes the case that a person has authority to enter a Ulysses contract only insofar as her expressed will at t1 is a (...) better expression of the values that remain attributable to her at t2 than is her expressed will at t2. (shrink)

Even though respect for integrity is hailed in several authoritative legal and ethical documents, and is typically presented as a complement to respect for autonomy, it is largely neglected in many leading works in ethics. Is such neglect warranted, or does it express a prejudice? This article argues that the latter is the case, and that this is due to misplaced conceptual concerns. It offers some proposals as regards the conceptualization of integrity in social ethics in general and in biomedical (...) ethics in particular. Five main directions of interpretation of “integrity” are discerned and shown to be relevant for different areas of biomedical ethics. The defense of respect for integrity is served by a softening of principlism and by greater attention to context among the initial critics of this principle. (shrink)

On a traditional interpretation of the substituted judgement standard a person who makes treatment decisions on behalf of a non-competent patient ought to decide as the patient would have decided had she been competent. I propose an alternative interpretation of SJS in which the surrogate is required to infer what the patient actually thought about these end-of-life decisions. In clarifying SJS it is also important to differentiate the patient's consent and preference. If SJS is part of an autonomy ideal of (...) the sort found in Kantian ethics, consent seems more important than preference. From a utilitarian perspective a preference-based reading of SJS seems natural. I argue that the justification of SJS within a utilitarian framework will boil down to the question whether a non-competent patient can be said to have any surviving preferences. If we give a virtue-ethical justification of SJS the relative importance of consent and preferences depends on which virtue one stresses-respect or care. I argue that SJS might be an independent normative method for extending the patient's autonomy, both from a Kantian and a virtue ethical perspective. (shrink)

In several jurisdictions, sex offenders may be offered chemical castration as an alternative to further incarceration. In some, agreement to chemical castration may be made a formal condition of parole or release. In others, refusal to undergo chemical castration can increase the likelihood of further incarceration though no formal link is made between the two. Offering chemical castration as an alternative to further incarceration is often said to be partially coercive, thus rendering the offender’s consent invalid. The dominant response to (...) this objection has been to argue that any coercion present in such cases is compatible with valid consent. In this article, we take a different tack, arguing that, even if consent would not be valid, offering chemical castration will often be supported by the very considerations that underpin concerns about consent: considerations of autonomy. This is because offering chemical castration will often increase the offender’s autonomy, both at the time the offer is made and in the future. (shrink)

Although suicide has traditionally carried a negative sanction in Western societies, this is now being challenged, and while there remains substantial public concern surrounding youth and elder suicide, there is a paradoxical push to relax the prohibition under certain circumstances. Central to the arguments behind this are the principles of respect for autonomy and the importance of rationality. It is argued here that the concepts of rationality and autonomy, while valuable, are not strong enough to substantiate a categorical "right to (...) suicide" and that the concepts of "understandability" and "respect" are more useful and able to provide the foundation for responding to a person expressing a wish to die. Roman suicide, sometimes held as an example of "rational suicide", illustrates the effects of culture, tradition and values on the attitudes to, and the practice of, suicide. (shrink)

A quiet revolution is occurring in the field of transplantation. Traditionally, transplants have involved solid organs such as the kidney, heart and liver which are transplanted to prevent recipients from dying. Now transplants are being done of the face, hand, uterus, penis and larynx that aim at improving a recipient's quality of life. The shift away from saving lives to seeking to make them better requires a shift in the ethical thinking that has long formed the foundation of organ transplantation. (...) The addition of new forms of transplants requires doctors, patients, regulators and the public to rethink the risk and benefit ratio represented by trade-offs between saving life, extending life and risking the loss of life to achieve improvements in the quality of life. (shrink)

Philosophers and psychologists have been attracted to two differing accounts of addictive motivation. In this paper, we investigate these two accounts and challenge their mutual claim that addictions compromise a person’s self-control. First, we identify some incompatibilities between this claim of reduced self-control and the available evidence from various disciplines. A critical assessment of the evidence weakens the empirical argument for reduced autonomy. Second, we identify sources of unwarranted normative bias in the popular theories of addiction that introduce systematic errors (...) in interpreting the evidence. By eliminating these errors, we are able to generate a minimal, but correct account, of addiction that presumes addicts to be autonomous in their addictive behavior, absent further evidence to the contrary. Finally, we explore some of the implications of this minimal, correct view. (shrink)