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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) | |
Previously proposed strategies for tackling hermeneutical injustices take for granted the interests people have in certain things about them being intelligible to them and/or to others, and seek to enable them to satisfy these interests. Strategies of this sort I call interests-as-given strategies. I propose that some hermeneutical injustices can instead be tackled by doing away with certain of these interests, and so with the possibility of their unfair non-satisfaction. Strategies of this sort I call interests-in-question strategies. As a case (...) study in when such an interests-in-question strategy ought to be pursued, I look at how to tackle hermeneutical injustices arising in the context of gender-affirming healthcare as provided to adults by the National Health Service in the UK. I argue that considerations of trust, privacy, and respect all support pursuing such a strategy. One way to do so, I suggest, would be by replacing the existing gatekeeping model with an informed consent model for the provision of gender-affirming healthcare. Considerations of hermeneutical justice can hence be added to the already-impressive case for undertaking this shift. (shrink) | |
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) | |
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) No categories | |
An episiotomy is ‘an intrapartum procedure that involves an incision to enlarge the vaginal orifice,’1 and is primarily justified as a way to prevent higher degrees of perineal trauma or to facilitate a faster birth in cases of suspected fetal distress. Yet the effectiveness of episiotomies is controversial, and many professional bodies recommend against the routine use of episiotomies. In any case, unconsented episiotomies are alarmingly common, and some care providers in obstetric settings often fail to see consent as necessary (...) in context. In their article, ‘The ethics of consent during labour and birth: episiotomies,’ van der Pijl et al reiterate that consent is necessary for episiotomies. They specify, further, that the antenatal period is crucial for exchanging information, establishing trust between the birthing subject and provider, and exploring the birthing subject’s—rather than the care provider’s—values and preferences regarding episiotomies. They recommend an individualised approach, which would enable birthing subjects to choose how and when they want to give consent. I applaud van der Pijl et al on their practicable recommendations regarding consent for episiotomies. This is certainly a step in the right direction where respect for birthing subjects’ bodily autonomy and integrity is concerned. Still, we must be reminded that consent alone is not coextensive with autonomy. The conditions for securing informed consent in healthcare does not guarantee that one’s decision is truly reflective of their values. After all, even valid consent does not rule out ‘normatively significant external influence’.2 Consent acquisition for obstetric procedures present no …. (shrink) | |
Gender dysphoria (GD) is marked by an incongruence between a person’s biological sex at birth, and their felt gender (or gender identity). There is continuing debate regarding the benefits and drawbacks of physiological treatment of GD in children, a pathway, beginning with endocrine treatment to suppress puberty. Currently, the main alternative to physiological treatment consists of the so-called “wait-and-see” approach, which often includes counseling or other psychotherapeutic treatment. In this paper, we argue in favor of a “third pathway” for the (...) diagnosis and treatment of GD in youths. To make our case, we draw on a recent development in bioethics: the phenomenological approach. Scholars such as Slatman and Svenaeus have argued that the extent to which the body can (or should be) manipulated or reconstructed through medical intervention is not only determined by consideration of ethical frameworks and social and legal norms. Rather, we must also take account of patients’ personal experience of their body, the personal and social values associated with it, and their understanding of its situation in their life: their narrative identities. We apply this phenomenological approach to medicine and nursing to the diagnosis and treatment of GD in youth. In particular, we discuss Zahavi and Martiny’s conception of the phenomenological interview, in order to show that narrative techniques can assist in the process of gender identification and in the treatment of youth presenting with GD. We focus on two case studies that highlight the relevance of a narrative-based interview in relations between patients, HCPs, and family, to expose the influence of social ideologies on how young people presenting with GD experience their bodies and gender. (shrink) | |
The general aim of this paper is to provide insight into the relevance of critical phenomenology for the study of the patient-provider relationship in health care systems in U.S. jails, prisons, and detention facilities. In particular, I utilize tools from the work of scholars studying phenomenological approaches to health care and structural forms of oppression to analyze several harms that arise from the provision of medical care under the punitive constraints of carceral facilities. | |
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) | |
Invalidation from healthcare practitioners is an experience shared by many patients, especially those marginalized or living with contested conditions (e.g., chronic pain, fibromyalgia, etc.). Invalidation can include not taking someone’s testimony seriously, imposing one’s thoughts, discrediting someone’s emotions, or not perceiving someone’s testimony as equal and competent. Epistemic injustices, that is, the disqualification of a person as a knower, are a form of invalidation. Epistemic injustices have been used as a theoretical framework to understand invalidation that occurs in the patient-healthcare (...) provider relationship. However, to date, the different recommendations to achieve epistemic justice have not been listed, analyzed, nor compared yet. This paper aims at better understanding the state of the literature and to critically review possible avenues to achieve epistemic justice in healthcare. A systematic and critical review of the existing literature on epistemic justice was conducted. The search in four databases identified 629 articles, from which 35 were included in the review. Strategies to promote epistemic justice that can be applied to healthcare are mapped in the literature and sorted in six different approaches to epistemic justice, including virtuous, structural, narrative, cognitive, and partnership approaches, as well as resistance strategies. These strategies are critically appraised. A patient partnership approach based on the Montreal Model, implemented at all levels of healthcare systems, seems promising to promote epistemic justice in healthcare. (shrink) | |
This special issue aims to delve deeper into the manifestations of epistemic injustice within asymmetric relationships, such as those between laypersons and experts (e.g. patients and physicians). We focus on distinguishing between warranted and unwarranted epistemic exclusions, recognizing that some epistemic harms may stem from justified exclusions, thus necessitating consideration of both just and unjust exclusions. Using examples from the medical field, including instances of misdiagnosis based on statistical correlations, we highlight the intricate nature of epistemic exclusions and their ethical (...) implications. While some exclusions may align with established epistemic practices, others arise from unnecessary practices fueled by identity prejudice or power dynamics, thus presenting as instances of epistemic injustice. Additionally, our exploration of epistemic gaps, particularly within complex environments like medicine, illuminates the challenges individuals face in effectively conveying their experiences and accessing pertinent information. While certain forms of epistemic isolation may be warranted, others result from structural barriers hindering knowledge exchange, prompting critical reflection on the ethical dimensions of such practices. (shrink) | |
In this paper, I will argue that one’s participation in the experience of pregnancy is an essential part of the constitution of selves. Taking the radical notion of concrete essence as my point of departure in the first part of my paper, as well as the fundamental continuity between essences and facts proposed by Husserl, I will briefly map out my proposal within the contemporary feminist debate. In particular, I will argue for re-framing the role of pregnancy, rejecting the idea (...) of birth as an unattainable limit for human selfhood, and defending two complementary theses: the experience of pregnancy essentially shape the self/other distinction; the continuity between our “pre” and “post” natal lives is primarily expressed through the embodied nature of the self. The core of my argument is this: everyone has taken part in the experience of pregnancy and, in doing so, their self-constitution and development have been shaped during this deeply transformative process. The implication is that the self has an essentially embodied origin which is closely connected to another self ; relationality, intersubjectivity, and affectivity turn out to be the grounding features in defining the self. Even though arguments about embodied aspect of the self have been widely discussed from several philosophical perspectives, there is a significant lack of phenomenological attention in this regard for the issue of pregnancy as the constitutive experience for self’s constitution. Conversely, the literature focused on maternal-fetal encounters, and on the process of pregnancy, tends to address unilaterally the experience of the maternal subject, and then to neglect the proper view of the fetus as pre-infant. When attention has been paid to the fetal perspective, the issues tackled are mostly bioethical. In this context, I offer an account of the complexity and non-linearity of fetal-maternal bodily encounters on a phenomenological level, putting forward a third alternative. In particular, I aim to show the intertwining of fetal and maternal perspectives, and to analyse and articulate philosophically the empirical fact that everyone has been a pre-infant. In the second part of my paper, I will take into account some essential structures that shape and constitute the process of pregnancy, as well as the actors involved – that is to say, the maternal subject and the fetal self. All in all, I aim, as a theoretical outcome of the paper, to build a phenomenology of pregnancy that contributes towards a rethinking of embodied selfhood from their origin. In this context, I offer a proposal of accounting for the complexity and non-linearity of fetal-maternal bodily encounters on a phenomenological level: my aim is to show the intertwining between fetal and maternal perspectives, as well as to eviscerate and articulate philosophically the empirical fact that everyone has been a pre-infant. In doing so, the theoretical outcome is to build a phenomenology of pregnancy that may actively contribute to the general movement of rethinking the embodied aspect of the self.In the second part of my paper, I will take into account some essential structures that shape and inform the experience of pregnancy, and also the actors involved, that is to say the maternal subject and the fetal self. (shrink) | |
When diagnosing psychological disorders, doctors are expected to take the mental anguish of patients and offer fast and accurate explanations. The pressure that comes with this often leaves doctors in need of epistemic shortcuts for faster diagnoses. One such epistemic shortcut is to lean on statistical data when offering a diagnosis. When used justly, doctors consider a patient’s testimony, exhibited symptoms and statistical data relating to the general features of the patient such as age, weight and sex to determine if (...) a patient has a given disorder or illness. Practices such as this have the capacity to yield good results at a quick pace, however, such practices may also be abused. With a focus on gender statistics and psychological diagnoses, I argue that systematic practices of epistemic injustice may occur when the statistical data becomes over-valued and the epistemic privilege of patients to be able to assert their own bodily and mental experiences is ignored. This places patients at risk of misdiagnosis, long-term damage and pain, or even death. It also produces patient mistrust both of themselves and of the medical community, which can carry further repercussions for public health. (shrink) | |
Among feminist philosophers, there are two lines of argument that sexist values are illegitimate in science, focusing on epistemic or ethical problems. This article supports a third framework, elucidating how value-laden science can enable epistemic oppression. My analysis demonstrates how purported knowledge laden with sexist values can compromise epistemic autonomy and contribute to paternalism and misogyny. I exemplify these epistemic wrongs with a case study of the morning-after pill during its 2006 switch to over-the-counter availability and its new drug label (...) from the US Food and Drug Administration that it “may prevent implantation.” Antiabortion science advisers created this label to protect zygotes based on debated value judgments that were later concealed. This zygote-centric knowledge enabled them to shape potential users by instructing “good mothers” that they ought to protect zygotes and punishing “bad mothers” by refusing their requests for the drug. Therefore, I argue that the sexist values and gender norms of antiabortionists that prioritize zygotic health are illegitimate in this context because they cause epistemic injustices and perpetuate epistemic oppression. Furthermore, I advocate against blanket protections for the “right to conscience” and “religious freedom” of healthcare providers because they reinforce the epistemic oppression of women, especially those on the margins.Content Warning: This article discusses sexual assault and refusals to provide contraception to patients, including survivors. (shrink) | |
Much work on clinical testimony assumes that none can know better than the patient what they experience. We show that in certain contexts this assumption is unwarranted; clinician expertise encompasses disease phenomenology, to the extent that the clinician may know better than the patient what the patient is experiencing or has experienced. Conversations between clinicians and people with functional/dissociative seizures (FDS) show that initial phenomenological reports of FDS (what we call ‘surface’ phenomenology) are often inconsistent with more fine-grained descriptions produced (...) after detailed inquiry (‘reflective’ phenomenology). Assuming the initial reports are made in good faith, this process involves the clinician showing the patient something about their experience they did not already (explicitly) know. Failure to engage in this reflective process can result in misdiagnosis and mistreatment. Thus, uncritical acceptance of patient testimony – an unwarranted credibility excess – may be as harmful as its unwarranted dismissal. We conclude that: the epistemically just clinician cannot rely on expertise in le corps objectif alone, they must also cultivate an understanding of le corps propre for the patients they encounter; and epistemic (in)justice cannot be considered solely something a clinician does to the patient. Instead, epistemic justice in the clinical encounter is an intrinsically collaborative process. (shrink) | |
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) |
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