Accounts of the value of patient choice in contemporary medical ethics typically focus on the act of choosing. Being the one to choose, it is argued, can be valuable either because it enables one to bring about desired outcomes, or because it is a way of enacting one’s autonomy. This paper argues that all such accounts miss something important. In some circumstances, it is having the opportunity to choose, not the act of choosing, that is valuable. That is because in (...) many situations whether one has, or is denied, that opportunity conveys how one is seen. In particular, it conveys whether or not one is seen as an equal and competent member of society. Adequately recognising this fact has implications for what healthcare professionals should do, ones that require a move away from the current focus on autonomy. The paper draws out these implications by focusing on patients who may struggle to be recognised as competent and equal members of society, and whose autonomy may thus itself sometimes be in question. (shrink)

This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that self-testing provides a (...) specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)

The duty to procure informed consent (IC) from patients before any significant intervention is among the pillars of medical and research ethics. The provision by the doctor of relevant information about treatment and free decision-making by the patient are essential elements of IC. The paper presents cases of IC where the free decision about treatment is not causally related to the information provided, and claims that such cases pose a difficulty parallel to that presented by the Gettier Problem in epistemology. (...) In analogy to the original problem with the concept of knowledge, these Gettier-type cases show an indeterminacy in the concept of IC: we either need to add some explicit additional condition of causal connection between information and consent, or else we should understand the concept in a new way—specifically, since the practice of autonomy necessarily involves some consideration of the relevant information, we must understand free consent in a way that no longer refers to patient autonomy. (shrink)

Autonomy and consent have been central values in Western moral and political thought for centuries. One way of understanding the bioethical models that started to develop, especially in the 1970s, is that they were about the fusion of a long-standing professional ethics with the core values underpinning modern political institutions. That there was a need for this kind of fusion is difficult to dispute, especially since the provision of health care has in most developed countries become an ever more important (...) concern of our political institutions, with governments playing a significant role in regulating and facilitating the provision of health care and in many countries even largely organizing it. There is, nevertheless, still room for dispute about how best to achieve this fusion and how to best think about autonomy and consent in a biomedical context. The simplest model we can have is probably about how being a person is largely about having the capacity of autonomous choice and that the main mode through which we exercise autonomy is by providing informed consent. Yet, liberal democracy's core idea that human beings have a high and equal value is also found in other accounts of the person. The human-rights framework provides an alternative model for thinking about personhood and about patient care. The human-rights approach is grounded, not in an account of autonomy, but in an account of the moral and political personhood that people possess merely by being human beings. In this approach, values like dignity and integrity, both highly relevant in a bioethical context, are identified as distinct values rather than being derived from and therefore reduced to respect for autonomous choice. The human-rights approach can supplement the problematic notion of autonomy that has been central to bioethics by placing this notion in a broader, strongly pluralistic framework. (shrink)

In this essay I argue that the same considerations that justify the strong commitment to anti-paternalism that has been affirmed in bioethics over the past half century, also calls for anti-paternalistic public health policies. First, I frame the puzzle—why are citizens morally entitled to make unhealthy and medically inadvisable decisions as patients but not as consumers? I then briefly sketch the reasons why bioethicists typically reject paternalism. Next, I argue that those same reasons tell against paternalism in public health ethics (...) as well. Patients do not waive their rights to make medically inadvisable decisions when they leave their physician’s care. James Wilson disagrees. After I sketch Wilson’s arguments for paternalism in public health policy, I then argue, contra Wilson, that public health paternalism is wrong for the same reason that medical paternalism is wrong, and that the prevalence of paternalism in public policy does not mean that paternalism is morally permissible. I discuss the state’s authority to enforce paternalistic policies and I sketch an anti-paternalist vision for health policymakers. To close, I consider several objections. (shrink)

Our understanding of emotional labor, while conceptually and empirically substantial, is normatively impoverished: very little has been said or written expressly about its ethical dimensions or ramifications. Emotional labor refers to efforts undertaken by employees to make their private feelings and/or public emotion displays consistent with job and organizational requirements. We formally define emotional labor, briefly summarize research in organizational behavior and social psychology on the causes and consequences of emotional labor, and present a normative analysis of its moral limits (...) focused on conditional rights and duties of employers and employees. Our focus is on three points of conflict involving rights and duties as they apply to the performance of emotional labor: when employees’ and organizations’ rights conflict, when employees’ rights conflict with their duties, and when organizations’ rights conflict with their duties. We discuss implications for future inquiry as well as managerial practice. (shrink)

In recent years, the principle of informed consent has come under significant pressure with the rise of biobanks and data infrastructures for medical research. Study-specific consent is unfeasible in the context of biobank and data infrastructure research; and while broad consent facilitates research, it has been criticised as being insufficient to secure a truly informed consent. Dynamic consent has been promoted as a promising alternative approach that could help patients and research participants regain control over the use of their biospecimen (...) and health data in medical research. Critical voices have focused mainly on concerns around its implementation; but little has been said about the argument that dynamic consent is morally superior to broad consent as a way to respect people’s individual autonomy. In this paper, we identify two versions of this argument—an information-focused version and a control-focused version—and then argue that both fail to establish the moral superiority of dynamic over broad consent. In particular, we argue that since autonomous choices are a certain species of choices, it is neither obvious that dynamic consent would meaningfully enhance people’s autonomy, nor that it is morally justifiable to act on every kind of consent choice enabled by dynamic consent. (shrink)

IntroductionExtended decision -making through the use of proxy decision -makers has been enshrined in a range of International Codes, Professional Guidance and Statute,For example, the UK Mental Capacity Act section 9.1; The General Medical Council ; the US National Guardianship Association ; Nuffield Council on Bioethics ; CIOMS-WHO section 6. Court cases such as Re Quinlan in the US have also contributed to establishing the groundings for the legal status of the proxy, albeit in terms of who might be suitable (...) as a proxy in cases where there was no clear appointment of them by a still competent individual. and is now widely seen as a useful means through which we can exercise control over decisions that affect our lives when we have lost capacity to make these decisions for ourselves.I will here limit myself to discussion of proxy consent for adults appointed prior to the loss of competence by the person they are acting as proxy for. The issue of p. (shrink)

The global increase in patients with chronic conditions has led to increased interest in ethical issues regarding such conditions. A basic biomedical principle—respect for autonomy—is being reexamined more critically in its clinical implications. New accounts of this basic principle are being proposed. While new accounts of respect for autonomy do underpin the design of many public programs and policies worldwide, addressing both chronic disease management and health promotion, the risk of applying such new accounts to clinical setting remain understudied. However, (...) the application of new accounts of respect for autonomy to clinical settings could support disrespectful attitudes toward or undue interference with patients with chronic conditions. Reconsidering autonomy and respect using Kantian accounts, this paper proposes respect for persons as an alternative basic bioethical principle to respect for autonomy. Unlike the principle of respect for persons in the Belmont Report, our principle involves respecting any patient’s decisions, behaviors, emotions, or life-style regardless of his or her “autonomous” capabilities. Thus, attitudes toward patients should be no different irrespective of the assessment of their decisional or executive capabilities. (shrink)

Deception in research is contentious, as ethical codes stress informed consent, yet complete disclosure may jeopardise validity. Indian Council for Medical Research (ICMR) guidelines classify deception into active, incomplete, and authorised forms. This study explores the ethical justification for incomplete (partial disclosure), permissible instances, and the dilemma faced by ethics committees in balancing scientific rigour and participant protection. The qualitative, non-experimental cross-sectional research, using in-depth interviews, identifies themes through thematic analysis. Findings reveal challenges for ethics committees, as incomplete information hampers (...) understanding, amongst others. The paper proposes an ethics committee framework, urging researchers to minimise or avoid partial deception and recommending institutional awareness campaigns and standard operating procedures for minimal-harm studies using partial disclosure. Therefore, it proposes that partial disclosure should be justified by the 3Vs—value, validity, and veracity to preserve research integrity. (shrink)

Many argue that consumers possess a “right to know” when products contain ingredients derived from genetically modified organisms, on the grounds that it would protect consumer autonomy. In this paper, I critically evaluate that claim. I begin by providing a version of the “consumer autonomy” argument, showing that its success relies on ambiguities in the notion of autonomy. I then distinguish four approaches to autonomy and articulate the circumstances under which they would support active disclosure of a product property. I (...) argue that none of these conceptions would support active disclosure of the presence of ingredients derived from genetically modified organisms. (shrink)

Artificial intelligence (AI)-based digital phenotyping, including computational speech analysis, increasingly allows for the collection of diagnostically relevant information from an ever-expanding number of sources. Such information usually assesses human behaviour, which is a consequence of the nervous system, and so digital phenotyping may be particularly helpful in diagnosing neurological illnesses such as Alzheimer’s disease. As illustrated by the use of computational speech analysis of Alzheimer’s disease, however, neurological illness also introduces ethical considerations beyond commonly recognised concerns regarding machine learning and (...) data collection in everyday environments. Individuals’ decision-making capacity cannot be assumed. Understanding of analytical results will likely be limited even as the personal significance of those results is both highly sensitive and personal. In a traditional clinical evaluation, there is an opportunity to ensure that information is relayed in a way that is highly customised to the individual’s ability to understand results and make decisions, and privacy is closely protected. Can any such assurance be offered as digital phenotyping technology continues to advance? AI-supported digital phenotyping offers great promise in neurocognitive disorders such as Alzheimer’s disease, but it also poses ethical challenges. We outline some of these risks as well as strategies for risk mitigation. (shrink)

Respect for autonomy is an important moral principle within medical ethics. However, the question of whether the normative importance of respect for autonomy is derived from other moral principles (such as welfare) or has independent moral value is debatable. In this paper it is argued that the normative importance of autonomy is derived from both welfare and non-welfare considerations. Welfare considerations provide two types of reason to respect autonomy, one related to the role of autonomy in creating welfare and one (...) related to its role in constituting welfare. In addition, autonomy seems to have normative importance that is unrelated to welfare considerations. This type of normative role is difficult to defend within medical ethics, because most non-welfare justifications of autonomy work for only a proportion of the autonomous decisions that patients make and give no clear guidance on how to respond to autonomous yet welfare-reducing treatment requests. A recent account of autonomy (Stephen Darwall’s “demand” account) provides a nuanced defence of autonomy that does not rely on welfare considerations. Darwall’s approach seems to work well within medical ethics and provides a principled explanation of how to respond to autonomous patient requests for treatment options that may not be in their best medical interests. It is argued that to fully respect autonomy within a medical consultation, practitioners must consider non-welfare autonomy as well as instrumental and intrinsic welfare-related autonomy. (shrink)

Newborn bloodspot screening programs are some of the longest running population screening programs internationally. Debate continues regarding the need for parents to give consent to having their child screened. Little attention has been paid to how meanings of consent-related terminology vary among stakeholders and the implications of this for practice. We undertook semi-structured interviews with parents, healthcare professionals and policy decision makers in two Canadian provinces. Conceptions of consent-related terms revolved around seven factors within two broad domains, decision-making and information (...) attainment. Decision-making comprised: parent decision authority; voluntariness; parent engagement with decision-making; and the process of enacting choice. Information ascertainment comprised: professional responsibilities ; parent responsibilities; and the need for discussion and understanding prior to a decision. Our findings indicate that consent-related terms are variously understood, with substantive implications for practice. We suggest that consent procedures should be explained descriptively, regardless of approach, so there are clear indications of what is expected of parents and healthcare professionals. Support systems are required both to meet the educational needs of parents and families and to support healthcare professionals in delivering information in a manner in keeping with parent needs. (shrink)