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)

As a study involving diabetes care demonstrates, children sometimes have a much more sophisticated capacity for taking charge of their own health care decisions than is usually recognized in bioethics. Protecting these children from their disease means involving them in their treatment as much as possible, helping them to understand it and take responsibility for it so that they can navigate the multitude of daily decisions that become part of the diabetes medical regimen.

Presenting real life cases from clinical practice, this book claims that children can be conceived of as moral equals without ignoring the fact that they still are children and in need of strong family relationships. Drawing upon recent advances in childhood studies and its key feature, the ‘agentic child’, it uncovers the ideology of adultism which has seeped into much what has been written about childhood ethics. However, this book also critically examines those positions that do accord moral equality to (...) children but on grounds not strong enough to support their claim. It lays the groundwork for a theory of moral equality by assessing the concepts of parenthood, family, best interest, paternalism, and, above all, autonomy and trust which are so important in envisioning what we owe the child. It does not only show how children – like adults – should be considered moral agents from infancy but also how ethical theories addressing adults can significantly profit from recognizing this. The analysis takes into account contributions from European as well as American scholars and makes use of a wide range of ethical, psychological, cultural, and social-scientific research. (shrink)

Research from behavioural sciences shows that people reach decisions in a much less rational and well-considered way than was often assumed. The doctrine of informed consent, which is an important ethical principle and legal requirement in medical practice, is being challenged by these insights into decision-making and real-world choice behaviour. This article discusses the implications of recent insights of research on decision-making behaviour for the informed consent doctrine. It concludes that there is a significant tension between the often non-rational choice (...) behaviour and the traditional theory of informed consent. Responsible ways of dealing with or solving these problems are considered. To this end, patient decisions aids are discussed as suitable interventions to support autonomous decision-making. However, current PDAs demand certain improvements in order to protect and promote autonomous decision-making. Based on a conception of autonomy, we will argue which type of improvements are needed. (shrink)

McCabe & Healey argue that in patient‐psychiatrist interaction, the more the participants engage in repair, i.e., trying to fix potential misunderstandings, the better the outcomes of the interaction, as measured by treatment adherence and the quality of the Dr – patient relationship. This holds both for self‐repair, when psychiatrists fix their own utterances, as well as other‐repair, where patients try to fix the understanding displayed by the psychiatrist.

Many individuals who have mental disorders often report negative experiences of a distinctively epistemic sort, such as not being listened to, not being taken seriously, or not being considered credible because of their psychiatric conditions. In an attempt to articulate and interpret these reports we present Fricker’s concepts of epistemic injustice (Fricker, 2007, p. 1) and then focus on testimonial injustice and hermeneutic injustice as it applies to individuals with mental disorders. The clinical impact of these concepts on quality of (...) care is discussed. Within the clinical domain, we contrast epistemic injustice with epistemic privilege and authority. We then argue that testimonial and hermeneutic injustices also affect individuals with mental disorders not only when communicating with their caregivers but also in the social context as they attempt to reintegrate into the general society and assume responsibilities as productive citizens. Following the trend of the movement of mental health care to the community, the testimonies of people with mental disorders should not be restricted to issues involving their own personal mental states. (shrink)

In this paper we argue that ill persons are particularly vulnerable to epistemic injustice in the sense articulated by Fricker. Ill persons are vulnerable to testimonial injustice through the presumptive attribution of characteristics like cognitive unreliability and emotional instability that downgrade the credibility of their testimonies. Ill persons are also vulnerable to hermeneutical injustice because many aspects of the experience of illness are difficult to understand and communicate and this often owes to gaps in collective hermeneutical resources. We then argue (...) that epistemic injustice arises in part owing to the epistemic privilege enjoyed by the practitioners and institutions of contemporary healthcare services—the former owing to their training, expertise, and third-person psychology, and the latter owing to their implicit privileging of certain styles of articulating and evidencing testimonies in ways that marginalise ill persons. We suggest that a phenomenological toolkit may be part of an effort to ameliorate epistemic injustice. (shrink)

Critical realism is a philosophy of social science that analyses and aims to remedy current problems and gaps. Basic tenets of positivist and quantitative research tend to contradict those of qualitative and interpretive research, and critical realism proposes ways to resolve the contradictions. Vital themes in childhood research that are reviewed in this article include a comparison with feminist research, critical realism, being and thought, transitive and intransitive, theory/practice consistency, agency and structure, closed and open systems, micro and macro in (...) the global/local nexus, four planar social being, facts and values, and transformative change through the four-stage MELD dialectic. Critical realism aims to understand the world in order to be able move from coercion towards creative liberating power. (shrink)