Breast Cancer (BC) is a debilitating disease with the global mortality rate of 13.0 per 100,000 of population (Globocan, 2018). BC affects the physical, mental, and emotional well-being and quality...

Domestic violence and abuse (DVA) 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)

While there is a steadily growing literature on epistemic injustice in healthcare, there are few discussions of the role that biomedical technologies play in harming patients in their capacity as knowers. Through an analysis of newborn and pediatric genetic and genomic sequencing technologies (GSTs), I argue that biomedical technologies can lead to epistemic injustice through two primary pathways: epistemic capture and value partitioning. I close by discussing the larger ethical and political context of critical analyses of GSTs and their broader (...) implications for just and equitable healthcare delivery. (shrink)

Artificial intelligence-based (AI) technologies such as machine learning (ML) systems are playing an increasingly relevant role in medicine and healthcare, bringing about novel ethical and epistemological issues that need to be timely addressed. Even though ethical questions connected to epistemic concerns have been at the center of the debate, it is going unnoticed how epistemic forms of injustice can be ML-induced, specifically in healthcare. I analyze the shortcomings of an ML system currently deployed in the USA to predict patients’ likelihood (...) of opioid addiction and misuse (PDMP algorithmic platforms). Drawing on this analysis, I aim to show that the wrong inflicted on epistemic agents involved in and affected by these systems’ decision-making processes can be captured through the lenses of Miranda Fricker’s account of hermeneutical injustice. I further argue that ML-induced hermeneutical injustice is particularly harmful due to what I define as an automated hermeneutical appropriation from the side of the ML system. The latter occurs if the ML system establishes meanings and shared hermeneutical resources without allowing for human oversight, impairing understanding and communication practices among stakeholders involved in medical decision-making. Furthermore and very much crucially, an automated hermeneutical appropriation can be recognized if physicians are strongly limited in their possibilities to safeguard patients from ML-induced hermeneutical injustice. Overall, my paper should expand the analysis of ethical issues raised by ML systems that are to be considered epistemic in nature, thus contributing to bridging the gap between these two dimensions in the ongoing debate. (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 (1) that justice and solidarity are two equally important and complementary values that should both be considered in healthcare practices and institutions and (2) 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)

Drawing on an analysis of complaint files that we conducted for the Irish Medical Council, this paper offers three possible explanations for the gap between the ubiquity of official commitments to taking patients’ complaints seriously and medical professional regulators’ dismissal—as not warranting an inquiry—of the vast majority of complaints submitted by members of the public. One explanation points to the “regulatory illiteracy” of many complainants, where the remit and threshold of seriousness of regulators is poorly understood by the general public. (...) Another points to possible processes of “institutional epistemic injustice” that unjustly undermine the credibility of certain complainants, such as those with low levels of formal education. A third explanation highlights the marginalization of the general public from “symbolic power” to define what matters in medical professional regulation. The paper is offered in a spirit of ideas in progress and raising questions rather than definitive insights into the regulatory process. (shrink)

Mental health legislation that requires patients to accept ‘care’ has come under increasing scrutiny, prompted primarily by a human rights ethic. Epistemic issues in mental health have received some attention, however, less attention has been paid to the possible epistemic problems of mental health legislation existing. In this manuscript, we examine the epistemic problems that arise from the presence of such legislation, both for patients without a prior experience of being detained under such legislation and for those with this experience. (...) We also examine how the doctor is legally obligated to compound the epistemic problems by the knowledge they prioritise and the failure to generate new knowledge. Specifically, we describe the problems of testimonial epistemic injustice, epistemic silencing, and epistemic smothering, and address the possible justification provided by epistemic paternalism. We suggest that there is no reasonable epistemic justification for mental health legislation that creates an environment that fundamentally unbalances the doctor–patient relationship. Significant positive reasons to counterbalance this are needed to justify the continuation of such legislation. (shrink)

In this paper, I argue that women who experience fibromyalgia may find themselves in a double bind. They may feel the need to describe their pain as extreme weakness or violence to convince health care providers and loved ones of the severity of it, but having to describe themselves repeatedly in these ways may be internalized and lead to a diminished sense of agency, especially in a culture that already systematically denigrates the strength and credibility of women.

Serious incident investigations—often conducted by means of Root Cause Analysis methodologies—are increasingly seen as platforms to learn from multiple perspectives and experiences: professionals, patients and their families alike. Underlying this principle of inclusiveness is the idea that healthcare staff and service users hold unique and valuable knowledge that can inform learning, as well as the notion that learning is a social process that involves people actively reflecting on shared knowledge. Despite initiatives to facilitate inclusiveness, research shows that embracing and learning (...) from diverse perspectives is difficult. Using the concept of ‘epistemic injustice’, pointing at practices of someone’s knowledge being unjustly disqualified or devalued, we analyze the way incident investigations are organized and executed with the aim to understand why it is difficult to embrace and learn from the multiple perspectives voiced in incident investigations. We draw from 73 semi-structured interviews with healthcare leaders, managers, healthcare professionals, incident investigators and inspectors, document analyses and ethnographic observations. Our analysis identified several structures in the incident investigation process, that can promote or hinder an actor’s epistemic contribution in the process of incident investigations. Rather than repeat calls to ‘involve more’ and ‘listen better’, we encourage policy makers to be mindful of and address the structures that can cause epistemic injustice. This can improve the outcome of incident investigations and can help to do justice to the lived experiences of the involved actors in the aftermath of a serious incident. (shrink)

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)

This article addresses how health professionals should monitor and safeguard their patients’ ability to participate in making clinical decisions and making subsequent decisions regarding the implementation of their treatment plan. Patient participation in clinical decision-making is essential, e.g. in self-care, where patients are responsible for most ongoing care. We argue that one common, fact-oriented patient education strategy may in practice easily tend to take a destructive form that we call error trawling. Illustrating with empirical findings from a video study of (...) consultations between clinicians and adolescent patients with diabetes, we argue on independent grounds that this strategy not only risks to overlook significant weaknesses in patient decision competence, but also to undermine patient capacity for decision-making and implementing care. In effect, this strategy for clinically monitoring and addressing the problem of fragile decision-making capacity brings hazards in need of address. We clo... (shrink)

The concept of epistemic injustice is the latest philosophical tool with which to try to theorise what goes wrong when mental health service users are not listened to by clinicians, and what goes right when they are. Is the tool adequate to the task? It is argued that, to be applicable at all, the concept needs some adjustment so that being disbelieved as a result of prejudice is one of a family of alternative necessary conditions for its application, rather than (...) a necessary condition all on its own. It is then argued that even once adjusted in this way, the concept does not fit well in the area where the biggest efforts have been made to apply it so far, namely the highly sensitive case of adult patients suffering from delusions. Indeed it does not serve the interests of service users struggling for recognition to try to apply it in this context, because there is so much more to being listened to than simply being believed. However, the concept is found to apply smoothly in many cases where the service users are children, for example, in relation to children’s testimony on the efficacy of treatment. It is suggested that further research would demonstrate the usefulness of the concept in adult cases of a similar kind. There are no data in this work. (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)

Epistemic injustice has undergone a steady growth in the medical ethics literature throughout the last decade as many ethicists have found it to be a powerful tool for describing and assessing morally problematic situations in healthcare. However, surprisingly scarce attention has been devoted to how epistemic injustice relates to physicians’ professional duties on a conceptual level. I argue that epistemic injustice, specifically testimonial, collides with physicians’ duty of nonmaleficence and should thus be actively fought against in healthcare encounters on the (...) ground of professional conduct. I do so by fleshing out how Fricker’s conception of testimonial injustice conflicts with the duty of nonmaleficence as defined in Beauchamp and Childress on theoretical grounds. From there, I argue that testimonial injustice produces two distinct types of harm, epistemic and non-epistemic. Epistemic harms are harms inflicted by the physician to the patient qua knower, whereas non-epistemic harms are inflicted to the patient qua patient. This latter case holds serious clinical implications and represent a failure of the process of due care on the part of the physician. I illustrate this through examples taken from the literature on fibromyalgia syndrome and show how testimonial injustice causes wrongful harm to patients, making it maleficent practice. Finally, I conclude on why nonmaleficence as a principle will not be normatively enough to fully address the problem of epistemic injustice in healthcare but nevertheless may serve as a good starting point in attempting to do so. (shrink)

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) is a highly contested illness. This paper analyzes the discursive production of knowledge about, and recognition of ME/CFS. By mobilizing insights from social epistemology and epistemic injustice studies, this paper reveals how actors, through their social-discursive practices, attribute to establishing, sustaining, and disregarding their own and others’ epistemological position. In focusing on the case of the Dutch newspaper reporting about ME/CFS, this paper shows that the debate about this condition predominantly revolves around the ways (...) in which people who make truth claims are represented. In being portrayed as gendered, affectatious, formerly very able, fanatical, or benevolent, people with ME/CFS are constructed as non-/credible. In the debate about what causes ME/CFS, by contrast, the production of non-/credible knowledge focuses more on the content of epistemic positions. Actors in this debate argue that they know the (clear) causes for the illness, something which functions as a discursive strategy to establish and enhance their credibility. This paper contends, however, that since this discursive demarcation of causes is consistently infused with uncertainty – with multi-interpretability, with diffuse explanations, and absence of current knowledge – the credibility of these actors’ epistemic position is undercut rather than established. (shrink)

In this paper we propose that our understanding of pathocentric epistemic injustices can be enriched if they are theorised in terms of predicaments. These are the wider socially scaffolded structures of epistemic challenges, dangers, needs, and threats experienced by ill persons due to their particular emplacement within material, social, and epistemic structures. In previous work we have described certain aspects of these predicaments - pathocentric epistemic injustices, pathophobia, and so on. We argue that thinking predicamentally helps us integrate the various (...) social, epistemic, and practical obstacles experienced by ill persons and also unify the many concepts available for theorising them (microaggessions, epistemic injustices, and so on). (shrink)

Miranda Fricker’s influential concept of epistemic injustice has recently seen application to many areas of interest, with an increasing body of healthcare research using the concept of epistemic injustice in order to develop both general frameworks and accounts of specific medical conditions and patient groups. This paper illuminates tensions that arise between taking steps to protect against committing epistemic injustice in healthcare, and taking steps to understand the complexity of one’s predicament and treat it accordingly. Work on epistemic injustice is (...) therefore at risk of obfuscating legitimate and potentially fruitful inquiry. This paper uses Chronic Fatigue Syndrome/Myalgic Encephalomyelitis as a case study, but I suggest that the key problems identified could apply to other cases within healthcare, such as those classed as Medically Unexplained Illnesses, Functional Neurological Disorders and Psychiatric Disorders. Future work on epistemic injustice in healthcare must recognise and attend to this tension to protect against unsatisfactory attempts to correct epistemic injustice. (shrink)

This paper points to a more expansive conception of grief by arguing that the losses of illness can be genuine objects of grief. I argue for this by illuminating underappreciated structural features of typical grief — that is, grief over a bereavement — which are shared but under-recognized. I offer a common chronic illness, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), as a striking case study. I then use this analysis to highlight some clinical challenges that arise should this claim receive uptake (...) in clinical practice. Extant literature on CFS/ME tells us that rates of comorbid depression are atypically high. If one accepts that people with CFS/ ME can grieve over losses associated with the condition, and that grief can be easily mistaken for depression in this context, this might suggest that rates of comorbid depression are inflated. I show, however, that the challenge of distinguishing between healthy and pathological grief arises in its place, and is just as tricky to solve. (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)

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 (‘open notes’). 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 (oftentimes, non-intentional) 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)

Social media has transformed how individuals handle their illnesses. While many patients increasingly use these online platforms to understand embodied information surrounding their conditions, healthcare professionals often frame these practices as negative and do not consider the expertise that patients generate through social media. Through a combination of insights from social epistemology and ignorance studies, this paper problematizes the distinctive understandings of social media between patients and healthcare professionals from a different perspective. A total of four ideas are introduced: (1) (...) healthcare professionals see embodied knowledge that arises from patients’ social media practices as uncomfortable knowledge; (2) healthcare professionals engage in several behaviours to preserve their authority and power in front of embodied knowledge created through these online platforms; (3) failing to consider embodied knowledge can have consequences not only in terms of trust between patients and healthcare professionals but also in connection with epistemological populism and the transition towards patient-centred care; and (4) media and digital health literacy could help healthcare professionals enhance the uses of social media in healthcare. Adopting this framework allows not only to offer valuable insights into how healthcare professionals manage patients’ social media practices, but also opens new avenues to improve healthcare digitisation. (shrink)