ABSTRACT Breast cancer affects well-being and life quality. Despite being labeled as a woman’s disease, the incidence of breast cancer in men is increasing. Men with breast cancer are diagnosed at later stages and experience stigmatization within the health care system. As such, they are prone to gender-based inequalities in health care. This paper examines epistemic injustice in health care professionals and male breast cancer patients’ encounters through analysis of research on the experiences of male breast cancer patients. Research indicates (...) that care professionals often do not seriously consider the complaints of men with breast cancer and do not accurately interpret their symptoms. (shrink)

Disabled people face obstacles to participation in epistemic communities that would be beneficial for making sense of our experiences and are susceptible to epistemic oppression. Knowledge and skills grounded in disabled people's experiences are treated as unintelligible within an ableist hermeneutic, specifically, the dominant conception of disability as lack. My discussion will focus on a few types of epistemic oppression—willful hermeneutical ignorance, epistemic exploitation, and epistemic imperialism—as they manifest in some bioethicists’ claims about and interactions with disabled people. One of (...) the problems with the epistemic phenomena with which I am concerned is that they direct our skepticism regarding claims and justifications in the wrong direction. When we ought to be asking dominantly situated epistemic agents to justify their knowledge claims, our attention is instead directed toward skepticism regarding the accounts of marginally situated agents who are actually in a better position to know. I conclude by discussing disabled knowers’ responses to epistemic oppression, including articulating the epistemic harm they have undergone as well as ways of creating resistant ways of knowing. (shrink)

Domestic violence and abuse are at last coming to be recognised as serious global public health problems. Nevertheless, many women with personal histories of DVA decline to disclose them to healthcare practitioners. In the health sciences, recent empirical work has identified many factors that impede DVA disclosure, known as barriers to disclosure. Drawing on recent work in social epistemology on testimonial silencing, we might wonder why so many people withhold their testimony and whether there is some kind of epistemic injustice (...) afoot here. In this paper, I offer some philosophical reflections on DVA disclosure in clinical contexts and the associated barriers to disclosure. I argue that women with personal histories of DVA are vulnerable to a certain form of testimonial injustice in clinical contexts, namely, testimonial smothering, and that this may help to explain why they withhold that testimony. It is my contention that this can help explain the low rates of DVA disclosure by patients to healthcare practitioners. (shrink)

The clinical encounter begins with presentation of an illness experience; but throughout that encounter, something else is constructed from it – a symptom. The symptom is a particular interpretation of that experience, useful for certain purposes in particular contexts. The hermeneutics of medicine – the study of the interpretation of human experience in medical terms – has largely taken the process of symptom-construction to be transparent, focussing instead on how constellations of symptoms are interpreted as representative of particular conditions. This (...) paper examines the hermeneutical activity of symptom-construction more closely. I propose a fourfold account of the clinical function of symptoms: as theoretical entities; as tools for communication; as guides to palliative intervention; and as candidates for medical explanation or intervention. I also highlight roles they might play in illness experience. I use this framework to discuss four potential failures of symptom-interpretation: failure of symptom-type and symptom-token recognition; loss of the complete picture of illness experience through overwhelming emphasis on its symptomatic interpretation; and intersubjective feedback effects of symptom description altering the ill person’s own perceptions of their phenomenal experience. I conclude with some suggestions of potential remedies for failures in the process of symptom-construction. (shrink)

This paper introduces the design principle of legibility as means to examine the epistemic and ethical conditions of sensing technologies. Emerging sensing technologies create new possibilities regarding what to measure, as well as how to analyze, interpret, and communicate said measurements. In doing so, they create ethical challenges for designers to navigate, specifically how the interpretation and communication of complex data affect moral values such as autonomy. Contemporary sensing technologies require layers of mediation and exposition to render what they sense (...) as intelligible and constructive to the end user, which is a value-laden design act. Legibility is positioned as both an evaluative lens and a design criterion, making it complimentary to existing frameworks such as value sensitive design. To concretize the notion of legibility, and understand how it could be utilized in both evaluative and anticipatory contexts, the case study of a vest embedded with sensors and an accompanying app for patients with chronic obstructive pulmonary disease is analyzed. (shrink)

An increasing number of older patients have to decide on a treatment plan for advanced chronic kidney disease, involving dialysis or conservative care. Shared decision-making is recommended as the model for decision-making in such preference-sensitive decisions. The aim of SDM is to come to decisions that are consistent with the patient’s values and preferences and made by the patient and healthcare professional working together. In clinical practice, however, SDM appears to be not yet routine and needs further implementation. A shift (...) from a biomedical to a person-centered conception might help to make the process more shared. Shared should, therefore, be interpreted as two persons bringing two perspectives to the table, that both need to be explored during the decision-making process. Starting from the patient’s perspective will enable to determine the mutual goals of care first and, subsequently, determine the best way for achieving those goals. To perform such SDM, the healthcare professional needs to become a skilled companion, being part of the patient’s relational context, and start asking the right questions about what matters to the patient as person. In this article, we describe the need for a person-centered conception of SDM for the setting of older patients with advanced CKD. (shrink)

The literature on epistemic injustice has thus far confined the concept of testimonial injustice to speech expressions such as inquiring, discussing, deliberating, and, above all, telling. I propose that it is time to broaden the horizons of testimonial injustice to include a wider range of expressions. Controversially, the form of communication I have in mind is non-verbal expression. Non-verbal expression is a vital, though often overlooked, form of communication, particularly for people who have certain neurocognitive disorders. Dependency upon non-verbal expression (...) is a common feature of some forms of neurocognitive disorders such as ‘intellectual disabilities’, autism and late-stage dementia. According to the narrow definition of testimonial injustice currently championed in the literature, people who express non-verbally are exempt from testimonial injustice. However, when we consider cases where meaningful communications from non-verbal people are dismissed or ignored in virtue of identity prejudice, there seems to be a distinct testimonial harm at play. Using late-stage dementia as a case study, I argue that the definition of testimonial injustice should be expanded to include all communicative practices, whether verbal or non-verbal, to encompass the epistemic harms inflicted upon some of the most marginalised in our society. (shrink)

The concepts of disease, illness and sickness capture fundamentally different aspects of phenomena related to human ailments and healthcare. The philosophy and theory of medicine are making manifold efforts to capture the essence and normative implications of these concepts. In parallel, socio-empirical studies on patients’ understanding of their situation have yielded a comprehensive body of knowledge regarding subjective perspectives on health-related statuses. Although both scientific fields provide varied valuable insights, they have not been strongly linked to each other. Therefore, the (...) article aims to scrutinise the normative-ethical implications of patient perspectives in building a bridge to the empirical ethics debates. Three potential fields of tension between the illness and the disease perspective are presented. Consequently, findings from empirical research examining patient perspectives on illness are displayed and the practical implications and associated ethical issues which arise are discussed. This leads to the conclusion that an explicit and elaborate empirical-ethical methodology is needed to deal appropriately with the complex interaction between patients’ views and the medico-professional view of disease. Kon’s four-stage model of normative-empirical collaboration is then applied against the background of empirical data on patient perceptions. Starting from this exemplary approach, the article suggests employing empirical-ethical frameworks for further research on the conceptual and normative issues, as they help to integrate perspectives from the philosophy of medicine with socio-empirical research. The combination of theoretical and empirical perspectives suggested contributes to a more nuanced discussion of the normative impact of patients’ actual understanding of illness. Further empirical research in this area would profit from explicitly considering potential ethical issues to avoid naturalistic fallacies or crypto-normative conclusions that may compromise healthcare practice. Vice versa, medico-theoretical debates could be enriched by integrating subjective views of those people who are immediately affected. (shrink)

When I was a 7 months pregnant medical student, an attending surgeon asked me to which specialty I would be applying. When I replied that I was hoping to match in general surgery, he touched my pregnant abdomen and said, “Not with that you’re not.” I am not alone. Gender bias and discrimination have been shown to negatively impact women surgeons throughout their careers and deter women from even applying in surgical fields.1 Bias against female surgical trainees leads to less (...) operative autonomy and higher dropout rates.2 3 Once faculty, women surgeons are less likely to reach leadership roles.4 Recent studies confirm the author’s assertion that implicit biases create substantial harm. The author has undertaken an important study, conducting in-depth interviews with 46 women surgeons in Australia that identifies four distinct types of bias causing cumulative harm. In all four types of biases: Workplace factors including leave policies and mentorship. Epistemic injustices, or unfair assessments of women surgeons’ credibility by patients and colleagues. Stereotyped expectations. Objectification, implicit biases were seen. While many of the broad factors impeding women in surgery are well known, the author argues that these subtler factors, including both implicit bias and epistemic injustice, have a large impact. The …. (shrink)

Mobile health apps for self-monitoring increasingly gain relevance for public health. As a mobile technology, they promote individual participation in health monitoring with the aim of disease prevention and the mitigation of health risks. In this paper, I argue that users of mHealth apps must engage in value trade-offs concerning their fundamental dimensions of well-being when using mobile health apps for the self-monitoring of health parameters. I particularly focus on trade-offs regarding the user’s self-determination as well as their capacity to (...) form personal attachments. Depending on the user’s level of advantage or disadvantage, value trade-offs can pose a threat to the users’ sufficient fulfillment of the dimensions of well-being. As such, value trade-offs can entrench existing structural injustices and prevent disadvantaged users to benefit from this technology. I argue that value trade-offs are, to some, a type of injustice that can drive disadvantaged users away from a sufficiency threshold of well-being, risk users to fall below the threshold, or have an accumulative effect on different dimensions of the user’s well-being. (shrink)

In this article, I apply the concept of solidarity to collective knowledge practices in healthcare. Generally, solidarity acknowledges that people are dependent on each other in many respects, and it captures those support practices that people engage in out of concern for others in whom they recognise a relevant similarity. Drawing on the rich literature on solidarity in bioethics and beyond, this article specifically discusses the role that epistemic solidarity can play in healthcare. It thus focuses, in particular, on solidarity’s (...) relationship with justice and injustice. In this regard, it is argued that justice and solidarity are two equally important and complementary values that should both be considered in healthcare practices and institutions and that solidarity often arises in unjust situations and can be a means to bring about justice. I transfer these ‘general’ insights about solidarity to knowledge practices in healthcare and link them to the discussion about epistemic injustices in healthcare and how to overcome them. I argue that epistemic solidarity can play an important role in overcoming epistemic injustices as well as—and independently from its contribution to justice—in knowledge production in medicine more generally. To demonstrate how epistemic solidarity can add to our understanding of collective knowledge practices, I discuss two examples: patients sharing their medical data for research purposes and healthcare professionals’ engagement with patients to better understand their afflictions. (shrink)

I explain the notion of contributory injustice, a kind of epistemic injustice, and argue that it occurs within psychiatric services, affecting those who hear voices. I argue that individual effort on the part of clinicians to avoid perpetrating this injustice is an insufficient response to the problem; mitigating the injustice will require open and meaningful dialogue between clinicians and service user organisations, as well as individuals. I suggest that clinicians must become familiar with and take seriously concepts and frameworks for (...) understanding mental distress developed in service user communities, such as Hearing Voices Network, and by individual service users. This is especially necessary when these concepts and frameworks explicitly conflict with medical or technical understandings of users’ experiences. I defend this proposal against three objections. (shrink)

Journal of Philosophy of Education, EarlyView.

Editors' introduction to the Puncta special issue on "Critically Sick: New Phenomenologies Of Illness, Madness, And Disability.".

This article explores the relation among illness, home, and belonging. Through a feminist phenomenological framework, I describe the disorientations of being diagnosed with borderline personality disorder and living with mental illness. This research anticipates the consequences of illness and serious disorientations for a conception of belonging as seamless body–world compatibility. Instead, this article examines how the stability of bodily dwellings in experiences of disorientation can suggest ways of being in the world that are more attentive to interdependency, unpredictability, and change (...) in human experience. I argue that these types of dwellings function as a more capacious and apposite metaphor to account for variations in belonging. This discussion outlines the ethical importance of building worlds that make room for different ways of being at home in and through our interactions with others. Although my discussion does not supply norms for ethical action, I contend that a feminist phenomenology of illness generates saliences and illuminates sensibilities that can transform our ways of being with others. (shrink)

Type 1 diabetes (T1D) is a chronic illness that requires intensive lifelong management of blood glucose concentrations by means of external insulin administration. There have been substantial developments in the ways of measuring glucose levels, which is crucial to T1D self-management. Recently, continuous glucose monitoring (CGM) has allowed people with T1D to keep track of their blood glucose levels in near real-time. These devices have alarms that warn users about potentially dangerous blood glucose trends, which can often be shared with (...) ther people. CGM is consistently associated with improved glycemic control and reduced hypoglycemia and is currently recommended by doctors. However, due to the costs of CGM, only those who qualify for hospital provision or those who can personally afford it are able to use it, which excludes many people. In this paper, I argue that unequal access to CGM results in: (1) unjust health inequalities, (2) relational injustice, (3) injustice with regard to agency and autonomy, and (4) epistemic injustice. These considerations provide prima facie moral reasons why all people with T1D should have access to CGM technology. I discuss the specific case of CGM policy in the Netherlands, which currently only provides coverage for a small group of people with T1D, and argue that, especially with additional considerations of cost-effectiveness, the Dutch government ought to include CGM in basic health care insurance for all people with T1D. (shrink)

I introduce the concept pathophobia, to capture the range of morally objectionable forms of treatment to which somatically ill persons are subjected. After distinguishing this concept from sanism and ableism, I argue that the moral wrongs of pathophobia are best analysed using a framework of vice ethics. To that end I describe five clusters of pathophobic vices and failings, illustrating each with examples from three influential illness narratives.

Ill persons suffer from a variety of epistemically-inflected harms and wrongs. Many of these are interpretable as specific forms of what we dub pathocentric epistemic injustices, these being ones that target and track ill persons. We sketch the general forms of pathocentric testimonial and hermeneutical injustice, each of which are pervasive within the experiences of ill persons during their encounters in healthcare contexts and the social world. What’s epistemically unjust might not be only agents, communities and institutions, but the theoretical (...) conceptions of health that structure our responses to illness. Thus, we suggest that although such pathocentric epistemic injustices have a variety of interpersonal and structural causes, they are also sustained by a deeper naturalistic conception of the nature of illness. (shrink)

In France, the Kouchner law of 2002 has allowed for a rethinking of patients’ rights; as well, it introduced the notion of health democracy. For example, in oncology, advocacy groups for patients and ex-patients now provide support and information to patients, representation of patients in health care institutions and state agencies, education to caregivers, and opportunities for participation in research. In fact, such advocacy groups have been so impactful that some patients have gone on to work in the health care (...) system itself; it is this rise in professionalism that is of interest in this article, where we will discuss the first results of two ongoing research projects on the subject. (shrink)

ABSTRACT This paper offers an account of institutional testimonial justice and describes one way that it breaks down, which we call institutional opacity. An institution is opaque when it becomes resistant to epistemic evaluation and understanding by its agents and users. When one cannot understand the inner workings of an institution, it becomes difficult to know how to comport oneself testimonially. We offer an account of an institutional ethos to explain what it means for an institution to be testimonially just; (...) we then describe how an ethos of institutional testimonial justice can break down when the institution becomes opaque. An opaque institution is especially problematic for individuals and groups already rendered epistemically vulnerable during their interactions with that institution, which we call epistemically vulnerabilised individuals. We articulate the features of an encounter between an epistemically vulnerabilised individual and an opaque institution. We end by tracing ameliorative strategies that could help repair a deteriorated institutional ethos of testimonial justice. (shrink)

The motivations of health service users and health care professionals to engage in participative practices differ. Health service users want to improve the patient experience by reducing epistemic injustices and increasing well-being, from a social justice perspective. Six motivations underlying participation co-exist. However, the compatibility of these motivations is not obvious. Moreover, democracy in health care has become protean and tensions are appearing between representative democracy and participatory democracy, of the indirect type. Combining the epistemic profiles of users with the (...) different motivations and reasons for action, and viewing them through the prism of complementarity could alleviate these tensions. (shrink)

En diciembre de 2011, Samba Martine, interna del Centro de Internamiento para Extranjeros de Aluche, muere de una infección evitable por no haber sido diagnosticada y tratada de manera adecuada, a pesar de haber solicitado insistentemente asistencia sanitaria. La madre de Samba, con el apoyo de varias entidades sociales, denuncia los hechos y llega a los tribunales. Ocho años más tarde, en junio de 2019, se anuncia la absolución por homicidio imprudente del único responsable procesado. Nueve años más tarde, en (...) octubre de 2020, el Ministerio de la Presidencia, Relaciones con las Cortes y Memoria Democrática emite una Resolución por la que se atiende la reclamación de responsabilidad patrimonial por el fallecimiento de Samba Martine. Tomando como punto de partida este caso, este trabajo tiene como objetivo analizar los factores que hacen de él un ejemplo de injusticia epistémica en tres niveles interrelacionados: micro, meso y macro. La relevancia de esta propuesta radica en mostrar cómo la dejación de funciones por parte de la Administración y sus instituciones contribuye a generar una ignorancia, que, combinada con la falta de credibilidad del testimonio de la víctima, tiene como resultado final su muerte. Lejos de ser un caso anecdótico, situaciones de injusticia epistémica como esta forman parte de la cotidianeidad de numerosas personas migrantes indocumentadas, que después de periplos de sufrimiento terminan internadas en limbos legales como los CIE. (shrink)

People who have mental health diagnoses are often subject to sanist microaggressions in which pejorative terms to describe mental illness are used to represent that which is discreditable. Such microaggressions reflect and perpetrate stigma against severe mental illness, often held unconsciously as implicit bias. In this article, I examine the sanist attitudes that underlie sanist microaggressions, analyzing some of the cognitive biases that support mental illness stigma. Then I consider what responsibility we have with respect to microaggressions. I argue that (...) all people share in a collective responsibility to engage in acts of epistemic resistance that challenge sanist attitudes so that it is easier for bystanders who witness microaggressions, and targets of microaggressions in particular, to identify microaggressions and to point out biased behavior. The act of pointing out bias is best understood as an act of epistemic resistance that is more effective and meaningful in the context of other acts of epistemic resistance. Ultimately, whether to point out bias is an individual decision that one must make after weighing the risks involved; engaging in a range of acts of epistemic resistance, on the other hand, is a moral responsibility everyone shares. (shrink)

This paper uses a non-ideal theory approach advocated for by Alison Jaggar to show that practices involved with the medicalization of serious mental disorders can subject people who have these disorders to a cycle of vulnerability that keeps them trapped within systems of injustice. When medicalization locates mental disorders solely as problems of individual biology, without regard to social factors, and when it treats mental disorders as personal defects, it perpetuates injustice in several ways: by enabling biased diagnoses through stereotyping, (...) by exploiting and coercing people who are seen as insufficiently competent, and by perpetuating idealized conceptions of choice and control that do not take into account people’s real limitations and the social context of health. Through practices of diagnosis, treatment, and recovery, medicalization can perpetuate injustices toward people who have serious mental disorders. (shrink)

A recent flurry of philosophical research on microaggression suggests that there are various practical and moral reasons why microaggression may be objectionable, including that it can be offensive, cause epistemic harms, express demeaning messages about certain members of our society, and help to reproduce an oppressive social order. Yet little attention has been given to the question of whether microaggression is also epistemically objectionable. This paper aims to further our understanding of microaggression by appealing to recent work on moral encroachment—the (...) idea that knowledge is sensitive to the moral stakes of believing—to argue that microaggression can be irrational in a distinctively epistemic sense, as it can involve relying on an epistemically unwarranted belief. This view suggests that the notion of epistemic justification may come apart from the notion of epistemic blame. (shrink)

Recent philosophical literature on epistemic harms has paid little attention to the difference between deliberate and non-deliberate harms. In this paper, I analyze the “Curare Case,” a case from the 1940’s in which patient testimony was disregarded by physicians. This case has been described as an instance of epistemic injustice. I problematize this description, arguing instead that the case shows an instance of “epistemic disadvantage.” I propose epistemic disadvantage indicates when harms result from warranted asymmetric relations that justifiably exclude individuals (...) from hermeneutical participation. Epistemic disadvantage categorizes harms that result from justifiable exclusions, are non-deliberate, and result from poor epistemic environments. This analysis brings out a meaningful difference between accidental and deliberate harms in communicative exchanges. (shrink)

In this paper, my goal is to use an epistemic injustice framework to extend an existing normative analysis of over-medicalization to psychiatry and thus draw attention to overlooked injustices. Kaczmarek has developed a promising bioethical and pragmatic approach to over-medicalization, which consists of four guiding questions covering issues related to the harms and benefits of medicalization. In a nutshell, if we answer “yes” to all proposed questions, then it is a case of over-medicalization. Building on an epistemic injustice framework, I (...) will argue that Kaczmarek’s proposal lacks guidance concerning the procedures through which we are to answer the four questions, and I will import the conceptual resources of epistemic injustice to guide our thinking on these issues. This will lead me to defend more inclusive decision-making procedures regarding medicalization in the DSM. Kaczmarek’s account complemented with an epistemic injustice framework can help us achieve better forms of medicalization. I will then use a contested case of medicalization, the creation of Premenstrual Dysphoric Disorder in the DSM-5 to illustrate how the epistemic injustice framework can help to shed light on these issues and to show its relevance to distinguish good and bad forms of medicalization. (shrink)

Dans ce texte, je suggère que les personnes souffrant d’anorexie mentale s’infligent une forme particulière de violence épistémique lorsqu’elles ignorent volontairement les symptômes de leur maladie. Pour ce faire, dans une démarche inspirée par celle de Havi Carel, je présente d’abord le rapport particulier qu’entretiennent les personnes souffrant d’anorexie avec leur corps, et ce, à l’aide de trois axes d’analyse empruntés à Susan Bordo, soit le dualisme Corps/Esprit, les idéaux de contrôle et d’autonomie, et les rapports de genre. Je propose (...) ensuite le concept de violence épistémique auto-infligée en montrant que l’ignorance volontaire de la faim a pour objectif de préserver l’identité des personnes vivant avec cette maladie comme autonomes et en contrôle, autrement dit comme n’étant pas « malades ». (shrink)

Este texto es la traducción del capítulo cuarto de The Routledge Handbook of Epistemic Injustice, editado por Ian James Kidd, José Medina y Gaile Pohlhaus Jr. En él, Miranda Fricker aclara y delimita los conceptos de injusticia hermenéutica y testimonial, proporcionando ejemplos, narrando su genealogía, respondiendo a algunas de las críticas que recibieron estos conceptos, así como estableciendo relaciones de semejanza y contraste con otras concepciones de la justicia y otras ramas de la filosofía.

Menschen mit psychischer Erkrankung sterben statistisch gesehen früher als die Allgemeinbevölkerung. Ein Grund hierfür ist, dass sie eine schlechtere somatische Gesundheitsversorgung erhalten. Wir argumentieren, dass ableistische Netzwerke sozialer Bedeutung zu einer Abwertung der epistemischen Kompetenz von Menschen mit psychischer Erkrankung führen. Diese Abwertung kann mit dem Konzept der testimonialen Ungerechtigkeit erfasst werden. Testimoniale Ungerechtigkeit bezeichnet das ungerechtfertigte Herabstufen der Glaubwürdigkeit einer*s Sprecher*in aufgrund eines Vorurteils gegen ihre*seine soziale Identität. Wir analysieren ethische und epistemische Folgen testimonialer Ungerechtigkeit als wichtige Ursachen der (...) schlechteren Gesundheitsversorgung von Menschen mit psychischer Erkrankung. Testimoniale Ungerechtigkeit kann zu medizinischen Behandlungsfehlern führen und für Betroffene schwerwiegende gesundheitliche Folgen nach sich ziehen. Zudem kann sie zu einem Vertrauensverlust von Menschen mit psychischer Erkrankung in das Gesundheitssystem führen. Daher trägt testimoniale Ungerechtigkeit zur strukturellen Diskriminierung von Menschen mit psychischer Erkrankung bei. Vor diesem Hintergrund diskutieren wir, wie die somatische Gesundheitsversorgung unter ethischen Gesichtspunkten verbessert werden kann. (shrink)

In this essay, I argue that certain injustices faced by mentally disabled persons are epistemic injustices by drawing upon epistemic injustice literature, especially as it is developed by Miranda Fricker. First, I explain the terminology and arguments developed by Fricker, Gaile Pohlhaus, Jr., and Kristie Dotson that are useful in theorizing epistemic injustices against mentally disabled people. Second, I consider some specific cases of epistemic injustice to which mentally disabled persons are subject. Third, I turn to a discussion of severely (...) mentally disabled persons who, because they are unable to share information or develop interpretations of shared social experiences, may fall outside Fricker’s discussion of epistemic injustice. Fourth and finally, following arguments given by Kristie Dotson and Christopher Hookway, I define and explain a type of epistemic injustice: intimate hermeneutical injustice that I believe supplements other discussions of epistemic injustice. (shrink)

Human beings as objects, and we are objects inter alia, offer information, even knowledge. And yet, in a society marked by pervasive identity prejudice, even objects do not offer neutral facts. Here, I argue that the harms imposed on those who suffer testimonial injustices cannot be sufficiently understood through the ethical lens of objectification. Such persons are not simply objectified, not simply treated as mere sources of information rather than as informants. Even as objects (not mere objects), they are often (...) unable to testify on their own behalf or testify to true facts of the matter. Rather than follow Miranda Fricker’s argument that testimonial injustices are acts of objectification, I argue that they are better understood as acts of what Ann Cahill calls derivatization. A re-examination of Fricker’s account of the wrong of testimonial injustice as derivatizing rather than objectifying clarifies the wrong of epistemic injustice, reinforces the mutuality of testimonial exchanges where both the speaker and listener are actively engaged and obligated to participate well to succeed, and opens up a discussion of how even when being treated as a source of information, informants can be mistreated. (shrink)

Health policymakers employ utility measures to inform resource allocation decisions. They often rely on a conceptual tool called the quality-adjusted life year that discounts the value of years lived in a state of disability relative to years lived in full health. A representative sample of the general public is asked to place values on hypothetical health states as part of a standard gamble or time trade-off task. Policymakers use the resulting values to calculate the number of QALYs gained through particular (...) interventions. Utilitarian reasoning mandates that policymakers maximize QALYs gained per unit cost.Although many scholars have explored the problems of distributive justice that arise from this system... (shrink)

Journal of Social Philosophy, EarlyView.

The phenomenological method has been fruitfully used to study the experience of illness in recent years. However, the role of illness is not merely that of a passive object for phenomenological scrutiny. I propose that illness, and pathology more generally, can be developed into a phenomenological method in their own right. I claim that studying cases of pathology, breakdown, and illness offer illumination not only of these experiences, but also of normal function and the tacit background that underpins it. In (...) particular, I claim that the study of embodiment can be greatly enhanced, and indeed would be incomplete, without attending to bodily breakdown and what I term bodily doubt. I offer an analogy between illness and Husserl’s epoché, suggesting that both are a source of distancing, and therefore motivate a reflective stance. (shrink)

Chronic fatigue syndrome or myalgic encephalomyelitis remains a controversial illness category. This paper surveys the state of knowledge and attitudes about this illness and proposes that epistemic concerns about the testimonial credibility of patients can be articulated using Miranda Fricker’s concept of epistemic injustice. While there is consensus within mainstream medical guidelines that there is no known cause of CFS/ME, there is continued debate about how best to conceive of CFS/ME, including disagreement about how to interpret clinical studies of treatments. (...) Against this background, robust qualitative and quantitative research from a range of countries has found that many doctors display uncertainty about whether CFS/ME is real, which may result in delays in diagnosis and treatment for patients. Strikingly, qualitative research evinces that patients with CFS/ME often experience suspicion by health professionals, and many patients vocally oppose the effectiveness, and the conceptualization, of their illness as psychologically treatable. We address the intersection of these issues and healthcare ethics, and claim that this state of affairs can be explained as a case of epistemic injustice. We find evidence that healthcare consultations are fora where patients with CFS/ME may be particularly vulnerable to epistemic injustice. We argue that the marginalization of many patients is a professional failure that may lead to further ethical and practical consequences both for progressive research into CFS/ME, and for ethical care and delivery of current treatments among individuals suffering from this debilitating illness. (shrink)

People with mental illnesses have higher prevalence and mortality rates with regard to common somatic diseases and causes of death, such as cardio-vascular conditions or cancer. One factor contributing to this excess morbidity and mortality is the sub-standard level of physical healthcare offered to the mentally ill. In particular, they are often subject to diagnostic overshadowing: a tendency to attribute physical symptoms to a pre-existing diagnosis of mental illness. This might be seen as an unfortunate instance of epistemic bad luck, (...) where particular features of a group of patients make a timely and correct diagnosis unlikely. While this can explain some cases of diagnostic overshadowing, I argue that in other cases, epistemic injustice is involved. Analyzing the case of diagnostic overshadowing, I distinguish two kinds of testimonial injustice. For one, there are classic cases of transactional testimonial injustice resulting from prejudices against the mentally ill. In addition, there are cases of structural testimonial injustice resulting from features of health care systems. To overcome diagnostic overshadowing, remedies on the individual as well as structural level are thus needed. (shrink)

This article supports calls for an increased integration of patients into taxonomic decision making in psychiatry by arguing that their exclusion constitutes a special kind of epistemic injustice: preemptive testimonial injustice, which precludes the opportunity for testimony due to a wrongly presumed irrelevance or lack of expertise. Here, this presumption is misguided for two reasons: the role of values in psychiatric classification and the potential function of first-person knowledge as a corrective means against implicitly value-laden, inaccurate, or incomplete diagnostic criteria (...) sets. This kind of epistemic injustice leads to preventable epistemic losses in psychiatric classification, diagnosis, and treatment. (shrink)

A Professor of Medical Ethics and a theatre director, also mother and daughter, talk about health, illness, suffering, performance and practice. Using the lenses of ethical and performance theory, they explore what it means to be a patient, a spectator and a practitioner and cover many plays, texts and productions: Samuel Beckett’s Not I and All That Fall, Sarah Kane’s Crave, Tim Crouch’s An Oak Tree, Enda Walsh’s Ballyturk, Annie Ryan’s adaptation of Eimear McBride’s novel A Girl Is a Half-Formed (...) Thing, Duncan MacMillan’s People, Place and Things and Henrik Ibsen’s Hedda Gabler. These were selected because first we have seen, studied or worked with each and they have continued to inspire us. Second, they offer rich and revealing insights into the ways in which meaning is/are both negotiated and contested in relation to health and illness. It is the iterative negotiation of meaning that, it is argued, is the essence of narrative practice, be it in medicine or in the theatre. The difference and divergence of perception, response and interpretation to dramatic performance can test relationships, be they professional, creative or familial. Yet, the capacity to understand, and embrace, disagreement and uncertainty is vital; fundamental to a flourishing life. For it is by recognising our part in creating narratives, broken and otherwise, that we can begin to recognise the necessary interactionism and humanity of both medicine and theatre. (shrink)

Trust is frequently discussed with reference to the professional–patient relationship. However, trust is less explored in relation to the ways in which understanding of, and responses to, questions of ethics are discussed by both the “public” and “experts.” Public engagement activity in healthcare ethics may invoke “trust” in analysing a moral question or problem but less frequently conceives of trust as integral to “public engagement” itself. This paper explores the relationship between trust and the ways in which questions of healthcare (...) ethics are identified and negotiated by both “experts” and the public. Drawing on two examples from the author’s “public engagement” work—a radio programme for the British Broadcasting Corporation and work with a playwright and theatre—the paper interrogates the ways in which “public engagement” is often characterized. The author argues that the common approach to public engagement in questions of ethics is unhelpfully constrained by a systemic disposition which continues to privilege the professional or expert voice at the expense of meaningful exchange and dialogue. By creating space for novel interactions between the “expert” and the “public,” authentic engagement is achieved that enables not only the participants to flourish but also contributes to trust itself. (shrink)

This essay brings together critical perspectives from the discrete traditions of artists’ books and the medical humanities to examine artists’ books by three contemporary artists – Penny Alexander, Martha A. Hall and Amanda Watson-Will – that treat experiences of illness and wellbeing. Through its focus on a multimodal and multisensory art form that has allegiances with, but is not reduced to, narrative, the essay adds to recent calls to rethink key assumptions of illness narrative study and to challenge utilitarian approaches. (...) In particular, it draws attention to the aesthetic and imaginative elements of illness communication by exploring how artists’ books represent lived experiences in a distinctively palpable way and offer an “intimate authority” that extends beyond narrative legitimacy or a form of struggle against the medical gaze. By interrogating narrative’s dominance in medical humanities research, the essay further expands awareness of illness experiences that resist conventional forms of representation, and of alternative reflective practices within healthcare education that encourage engagement with both mind and body. (shrink)

The dominant discourse in chronic disease management centres on the ideal of person-centred healthcare, with an empowered patient taking an active role in decision-making with their healthcare provider. Despite these encouraging developments toward healthcare democracy, many person-centred conceptions of healthcare and programming continue to focus on the healthcare institution’s perspective and priorities. In these debates, the patient’s voice has largely been absent. This article takes the example of patient empowerment to show how the concept has been influenced by a variety (...) of competing and shifting influences that have led to conceptualisations and programming designed for the patient, but developed without the patient. The framework of epistemic injustice is proposed to unravel the complexity of these omissions. The concept can be defined as a wrong done to someone specifically in their capacity as a knower. It occurs when a person is ignored or not believed due to a prejudice of some kind. It has been applied to healthcare in order to better understand barriers for patient participation and will be used to better understand the problems with current empowerment definitions and implementation strategies. The article will end by proposing some methodologies to facilitate patient-developed concepts of empowerment. (shrink)

In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians. However, even in countries that have implemented (...) the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety. (shrink)

In many countries, including patients are legally entitled to request copies of their clinical notes. However, this process remains time-consuming and burdensome, and it remains unclear how much of the medical record must be made available. Online access to notes offers a way to overcome these challenges and in around 10 countries worldwide, via secure web-based portals, many patients are now able to read at least some of the narrative reports written by clinicians. However, even in countries that have implemented (...) the practice many clinicians have resisted the idea remaining doubtful of the value of opening notes, and anticipating patients will be confused or anxious by what they read. Against this scepticism, a growing body of qualitative and quantitative research reveals that patients derive multiple benefits from reading their notes. We address the contrasting perceptions of this practice innovation, and claim that the divergent views of patients and clinicians can be explained as a case of epistemic injustice. Using a range of evidence, we argue that patients are vulnerable to epistemic injustice. Nonetheless, we conclude that the marginalisation of patients’ access to their health information exemplifies a form of epistemic exclusion, one with practical and ethical consequences including for patient safety. (shrink)

Myalgic encephalomyelitis or chronic fatigue syndrome is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations —exhibit “militant” social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim of “militant” (...) patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications. Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS. (shrink)

Recognizing that truth is socially constructed or that knowledge and power are related is hardly a novelty in the social sciences. In the twenty-first century, however, there appears to be a renewed concern regarding people’s relationship with the truth and the propensity for certain actors to undermine it. Organizations are highly implicated in this, given their central roles in knowledge management and production and their attempts to learn, although the entanglement of these epistemological issues with business ethics has not been (...) engaged as explicitly as it might be. Drawing on work from a virtue epistemology perspective, this paper outlines the idea of a set of epistemic vices permeating organizations, along with examples of unethical epistemic conduct by organizational actors. While existing organizational research has examined various epistemic virtues that make people and organizations effective and responsible epistemic agents, much less is known about the epistemic vices that make them ineffective and irresponsible ones. Accordingly, this paper introduces vice epistemology, a nascent but growing subfield of virtue epistemology which, to the best of our knowledge, has yet to be explicitly developed in terms of business ethics. The paper concludes by outlining a business ethics research agenda on epistemic vice, with implications for responding to epistemic vices and their illegitimacy in practice. (shrink)

Why did such highly abstract ideas as truth, knowledge, or justice become so important to us? What was the point of coming to think in these terms? This book presents a philosophical method designed to answer such questions: the method of pragmatic genealogy. Pragmatic genealogies are partly fictional, partly historical narratives exploring what might have driven us to develop certain ideas in order to discover what these do for us. The book uncovers an under-appreciated tradition of pragmatic genealogy which cuts (...) across the analytic-continental divide, running from the state-of-nature stories of David Hume and the early genealogies of Friedrich Nietzsche to recent work in analytic philosophy by Edward Craig, Bernard Williams, and Miranda Fricker. However, these genealogies combine fictionalizing and historicizing in ways that even philosophers sympathetic to the use of state-of-nature fictions or real history have found puzzling. To make sense of why both fictionalizing and historicizing are called for, the book offers a systematic account of pragmatic genealogies as dynamic models serving to reverse-engineer the points of ideas in relation not only to near-universal human needs, but also to socio-historically situated needs. This allows the method to offer us explanation without reduction and to help us understand what led our ideas to shed the traces of their practical origins. Far from being normatively inert, moreover, pragmatic genealogy can affect the space of reasons, guiding attempts to improve our conceptual repertoire by helping us determine whether and when our ideas are worth having. (shrink)