Mary Jean Walker

An increasing number of patients receive diagnoses of disease without having any symptoms. These include diseases detected through screening programs, as incidental findings from unrelated investigations, or via routine checks of various biological variables like blood pressure or cholesterol. In this article, we draw on narrative identity theory to examine how the process of making sense of being diagnosed with asymptomatic disease can trigger certain overlooked forms of harm for patients. We show that the experience of asymptomatic disease can involve ‘mismatches’ between one’s beliefs about one’s health status on the one hand, and bodily sensations or past experience on the other. Patients’ attempts to integrate these diagnoses into their self-narratives often involve either forming inaccurate beliefs about bodily sensations and/or past experience, or coming to believe that feelings and experience do not necessarily track or predict health status, leading to an ongoing sense of vulnerability to ill health. These resulting alterations in self-understanding can sometimes be considered harmful, in view of their implications for ascriptions of responsibility and ongoing anxiety.

Boorse’s biostatistical theory states that diseases should be defined in ways that reflect disturbances of biological function and that are objective and value free. We use three examples from contemporary medicine that demonstrate the complex issues that arise when defining the boundaries of disease: polycystic ovary syndrome, chronic kidney disease, and myocardial infarction. We argue that the biostatistical theory fails to provide sufficient guidance on where the boundaries of disease should be drawn, contains ambiguities relating to choice of reference class, and is out of step with medical processes for identifying disease boundaries. Although proponents of the biostatistical theory might regard these practical issues as irrelevant to the aim of providing a theoretical account of disease, we take them to indicate the need for a theoretical account that is adequate for current needs—including limiting new forms of medicalization that are driven by the identification of disease based on dysfunction. Our processes for determining the boundaries for disease need to recognize that there is no value-free method for making these decisions.

Biological dysfunction is regarded, in many accounts, as necessary and perhaps sufficient for disease. But although disease is conceptualized as all-or-nothing, biological functions often differ by degree. A tension is created by attempting to use a continuous variable as the basis for a categorical definition, raising questions about how we are to pinpoint the boundary between health and disease. This is the line-drawing problem. In this paper, we show how the line-drawing problem arises within “dysfunction-requiring” accounts of disease, such as those of Christopher Boorse and Jerome Wakefield. We then provide several detailed examples to establish that biological dysfunction cannot provide a boundary. We examine potential ways of resolving the line-drawing problem, either by dropping one of the claims that generates it, or by appealing to additional criteria. We argue that two of these options are plausible, and that each of these can be applied with regard to different diseases.

Although health and disease occupy opposite ends of a spectrum, distinguishing between them can be difficult. This is the “line-drawing” problem. The papers in this special issue engage with this challenge of delineating the boundaries of disease. The authors explore different views as to where the boundary between disease and nondisease lies, and related questions, such as how we can identify, or decide, what counts as a disease and what does not; the nature of the boundary between the two categories; and what sorts of considerations could justify the location of that boundary. In exploring these questions, the papers draw on detailed clinical examples, provide theoretical critiques of existing approaches to disease definition, and offer new ways to conceptualize key features in debates about disease, including harm and biological dysfunction.

Many health care systems include programs that allow patients in exceptional circumstances to access medical interventions of as yet unproven benefit. In this article we consider the ethical justifications for—and demands on—these special access programs (SAPs). SAPs have a compassionate basis: They give patients with limited options the opportunity to try interventions that are not yet approved by standard regulatory processes. But while they signal that health care systems can and will respond to individual suffering, SAPs have several disadvantages, including the potential to undermine regulatory and knowledge-generation structures that constitute significant public goods. The “balance” between these considerations depends in part on how broadly SAPs are used, but also on whether SAPs can be made to contribute to the generation of knowledge about the effects of health interventions. We argue that patients should usually be required to contribute outcome data while using SAPs.

In the recent neuroethics literature, there has been vigorous debate concerning the ethical implications of the use of neurotechnologies that may alter a person’s identity. Much of this debate has been framed around the concept of authenticity. The argument of this chapter is that the ethics of authenticity, as applied to neurotechnological treatment or enhancement, is conceptually misleading. The notion of authenticity is ambiguous between two distinct and conflicting conceptions: self-discovery and self-creation. The self-discovery conception of authenticity is based on a problematic conception of a static, real inner self. The notion of self-creation, although more plausible, blurs the distinction between identity and autonomy. Moreover, both conceptions are overly individualistic and fail sufficiently to account for the relational constitution of personal identity. The authors propose that a relational, narrative understanding of identity and autonomy can incorporate the more plausible aspects of both interpretations of authenticity, while providing a normatively more illuminating theoretical framework for approaching the question of whether and how neurotechnologies threaten identity.

Recent evidence from the neurosciences and cognitive sciences provides some support for a narrative theory of self-understanding. However, it also suggests that narrative self-understanding is unlikely to be accurate, and challenges its claims to truth. This article examines a range of this empirical evidence, explaining how it supports a narrative theory of self-understanding while raising questions of these narrative's accuracy and veridicality. I argue that this evidence does not provide sufficient reason to dismiss the possibility of truth in narrative self-understanding. Challenges to the possibility of attaining true, accurate self-knowledge through a self-narrative have previously been made on the basis of the epistemological features of narrative. I show how the empirical evidence is consistent with the epistemological concerns, and provide three ways to defend the notion of narrative truth. I also aim to show that neuroethical discussions of self-understanding would benefit from further engagement with the philosophical literature on narrative truth.

Medicine seeks to overcome one of the most fundamental fragilities of being human, the fragility of good health. No matter how robust our current state of health, we are inevitably susceptible to future illness and disease, while current disease serves to remind us of various frailties inherent in the human condition. This article examines the relationship between fragility and uncertainty with regard to health, and argues that there are reasons to accept rather than deny at least some forms of uncertainty. In situations of current ill health, both patients and doctors seek to manage this fragility through diagnoses that explain suffering and provide some certainty about prognosis as well as treatment. However, both diagnosis and prognosis are inevitably uncertain to some degree, leading to questions about how much uncertainty health professionals should disclose, and how to manage when diagnosis is elusive, leaving patients in uncertainty. We argue that patients can benefit when they are able to acknowledge, and appropriately accept, some uncertainty. Healthy people may seek to protect the fragility of their good health by undertaking preventative measures including various tests and screenings. However, these attempts to secure oneself against the onset of biological fragility can cause harm by creating rather than eliminating uncertainty. Finally, we argue that there are good reasons for accepting the fragility of health, along with the associated uncertainties.

Neil Levy argues that while addicts who believe they are not addicts are self-deceived, addicts who believe they are addicts are just as self-deceived. Such persons accept a false belief that their addictive behaviour involves a loss of control. This paper examines two implications of Levy's discussion: that accurate self-knowledge may be particularly difficult for addicts; and that an addict's self-deceived belief that they cannot control themselves may aid their attempts at self-control. I argue that the self-deceived beliefs of addicts in denial and of self-described addicts differ in kind. Unlike the self-deception of an addict in denial, that of the self-described addict allows them to acknowledge their behaviour. As such, it may aid an addict to develop more self-control. A paradoxical implication is that this self-deception may allow an addict more self-knowledge