There is no systematic knowledge about how individuals with Locked-in Syndrome experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience as lived by the ill persons themselves, does not yet exist as an organized endeavor. The present article takes a step in that direction by reviewing various materials and making some suggestions. First-person narratives provide the most important sources, but very few have been discussed. LIS barely appears in bioethics and neuroethics. Research on (...) Quality of Life provides relevant information, one questionnaire study explores the sense of personal continuity in LIS patients, and LIS has been used as a test case of theories in “embodied cognition” and to explore issues in the phenomenology of illness and communication. A systematic phenomenology of LIS would draw on these different areas: while some deal directly with subjective experience, others throw light on its psychological, sociocultural and materials conditions. Such an undertaking can contribute to the improvement of care and QOL, and help inform philosophical questions, such as those concerning the properties that define persons, the conditions of their identity and continuity, or the dynamics of embodiment and intersubjectivity. (shrink)

Is consciousness intrinsically valuable? Some theorists favor the positive view, according to which consciousness itself accrues intrinsic value, independent of the particular kind of experience instantiated. In contrast, I favor the neutral view, according to which consciousness is neither intrinsically valuable nor disvaluable. The primary purpose of this paper is to clarify what is at stake when we ask whether consciousness is intrinsically valuable, to carve out the theoretical space, and to evaluate the question rigorously. Along the way, I also (...) show why the neutral view is attractive and why certain arguments for the positive view do not work. (shrink)

Recent work within such disparate research areas as the epistemology of perception, theories of well-being, animal and medical ethics, the philosophy of consciousness, and theories of understanding in philosophy of science and epistemology has featured disconnected discussions of what is arguably a single underlying question: What is the value of consciousness? The purpose of this paper is to review some of this work and place it within a unified theoretical framework that makes contributions (and contributors) from these disparate areas more (...) visible to one another. (shrink)

Disorders of consciousness pose a substantial ethical challenge to clinical decision making, especially regarding the use of life-sustaining medical treatment. For these decisions it is paramount to know whether the patient is aware or not. Recent brain research has been striving to assess awareness by using mainly functional magnetic resonance imaging. We review the neuroscientific evidence and summarize the potential and problems of the different approaches to prove awareness. Finally, we formulate the crucial ethical questions and outline the different articles (...) in this special issue on disorders of consciousness. (shrink)

Many controversies in bioethics turn on questions of moral status. Some moral status issues have received extensive bioethical attention, including those raised by abortion, embryo experimentation, and animal research. Beyond these established debates lie a less familiar set of moral status issues, many of which are tied to recent scientific breakthroughs. This review article surveys some key developments that raise moral status issues, including the development of in vitro brains, part-human animals, “synthetic” embryos, and artificial womb technologies. It introduces the (...) papers in this Special Issue, contextualises their contributions to the moral status literature, and highlights some enduring challenges of determining the moral status of novel types of beings. (shrink)

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

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

I am a person. But am I fundamentally and essentially a person? The animalist says no. So must the phenomenal continuity theorist, or so I will argue. Even if, contra animalism, we cannot survive zombification, being a subject of experience is not sufficient for being a person, and phenomenal continuity is not sufficient for our survival as the same person over time. These observations point the way to a positive account of personhood, and provide further insight into the conditions under (...) which literal survival preserves what matters. (shrink)

Although the abortion of fetuses with Down syndrome has become commonplace, infanticide is still widely rejected. Generally, there are three ways of justifying the differentiation between abortion and infanticide: by referring to the differences between the moral status of the fetus versus the infant, by referring to the differences of the moral status of the act of abortion versus the act of infanticide, or by separating the way the permissibility of abortion is justified from the way the impermissibility of infanticide (...) is justified. My argument is that none of these ways justifies the abortion of fetuses diagnosed with Down syndrome while simultaneously rejecting infanticide. Either the justification for abortion is consistent with infanticide, or it is implausible to justify abortion while rejecting infanticide. I conclude the article by making some preliminary remarks about how one might manage the situation posed by my argument. (shrink)

Recent studies indicate that patients who are diagnosed with vegetative states may retain more awareness than their clinical assessments suggest. Disorders of consciousness traditionally have been diagnosed on the basis of outwardly observable behaviors alone, but new functional imaging studies have shown surprising levels of brain activity in some patients, indicating that even higher-level cognitive functions like language processing and visual imagery may be preserved. For example, one recently developed method purports to detect voluntary mental imagery solely on the basis (...) of neural response patterns observed with functional magnetic resonance imaging. This line of research has already led to some widely reported cases of patients who were discovered to have more brain activity than expected. In November 2009, Rom Houben, a Belgian man who was thought to be in a coma for 23 years, was diagnosed with locked-in syndrome through the use of neuroimaging; however, that assessment was later overturned by further testing. (shrink)

In this paper, we review recent neuroimaging investigations of disorders of consciousness and different disciplines' understanding of consciousness itself. We consider potential tests of consciousness, their legal significance, and how they map onto broader themes in U.S. statutory law pertaining to advance directives and surrogate decision-making. In the process, we outline a taxonomy of themes to illustrate and clarify the variance in state-law definitions of consciousness. Finally, we discuss broader scientific, ethical, and legal issues associated with the advent of neuroimaging (...) for disorders of consciousness and conclude with policy recommendations that could help to mitigate confusion in this realm. (shrink)

How should we treat patients diagnosed as being in a persistent vegetative state (PVS) or minimally conscious state (MCS)? More specifically, should we treat them as having the full moral status of persons? Yes, or so we argue. First, we introduce the medical conditions of PVS, MCS, and the related conditions of Locked-in Syndrome and covert awareness. Second, we characterize the main argument for thinking diagnosed PVS patients are not persons. Third, we contend that this argument is defeated by mounting (...) empirical evidence for the considerable uncertainty of PVS diagnoses. Fourth, we characterize a new argument for PVS non-personhood suggested by Neil Levy and Julian Savulescu, one intended to accommodate the diagnostic uncertainty. According to this argument, even if diagnosed PVS patients are in fact MCS, it makes no difference because MCS patients are probably not persons either. Fifth, we challenge the new argument by assembling reasons for doubting the claim that MCS patients are not persons. The outcome is that it is fairly uncertain whether diagnosed PVS and MCS patients are persons or not. What should we do in light of this uncertainty? Sixth, we develop and support a guiding precautionary principle, which we call Precautionary Personhood. Finally, we apply the principle to the case of diagnosed PVS and MCS patients: we argue that given substantial uncertainty about their personhood we should go ahead and treat these patients as if they are persons. (shrink)

Two problems are considered here. One relates to who has moral status, and the other relates to who has moral responsibility. The criteria for mattering morally have long been disputed, and many humans and nonhuman animals have been considered “marginal cases,” on the contested edges of moral considerability and concern. The marginalization of humans and other species is frequently the pretext for denying their rights, including the rights to health care, to reproductive freedom, and to bodily autonomy. There is broad (...) agreement across cultural and philosophical traditions about the capacities and responsibilities of moral agents. I propose an inclusive and expansive way of thinking about moral status, situating it not in the characteristics or capacities of individuals, but in the responsibilities and obligations of moral agents. Moral agents, under this view, are not privileged or entitled to special treatment but rather have responsibilities. I approach this by considering some African communitarian conceptions of moral status and moral agency. I propose that moral agency can also be more expansive and include not just individual moral agents but collective entities that have some of the traits of moral agents: power, freedom, and the capacity to recognize and act on the demands of morality and acknowledge and respect the rights of others. Expanding who and what is a moral agent correspondingly extends moral responsibility for respecting rights and fostering the conditions for the health and well-being of humans and animals onto the collective entities who uniquely have the capacity to attend to global-scale health threats such as pandemics and human-caused climate change. (shrink)

We generally accept that medicine’s conceptual and ethical foundations are grounded in recognition of personhood. With patients in vegetative state, however, we’ve understood that the ethical implications of phenomenal consciousness are distinct from those of personhood. This suggests a need to reconsider medicine’s foundations. What is the role for recognition of consciousness (rather than personhood) in grounding the moral value of medicine and the specific demands of clinical ethics? I suggest that, according to holism, the moral value of medicine is (...) secured when conscious states are recognized in everyday medical science. Moreover, consciousness fully motivates traditional principles of clinical ethics if we understand respect for autonomy as respect for the dominion of an experiencer in the private, inescapable realm of bodily experience. When medicine’s foundations are grounded in recognition of consciousness, we understand how patients fully command respect even when they lack capacity to exercise their bodily dominion through decision-making. (shrink)

Badania przy użyciu rezonansu magnetycznego sugerują, że przynajmniej niektórzy pacjenci w tzw. stanie wegetatywnym mogą być bardziej „świadomi”, niż to się do tej pory wydawało. W artykule zamierzam omówić te badania; następnie rozważę, o jakie rozumienie pojęcia świadomości może w nich chodzić; a wreszcie zastanowię się nad etycznymi implikacjami tych odkryć. Zamierzam też rozważyć, czy posiadanie wyższych form świadomości zawsze ma być dodatkową racją przemawiającą przeciwko zaprzestaniu podtrzymywaniu funkcji życiowych. Tym samym, w artykule chciałbym wskazać istotność badań z zakresu kognitywistyki (...) dotyczących pojęcia świadomości dla etycznej oceny pewnych praktyk medycznych. (shrink)