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...

When one communicates that they are in pain, it is often assumed that the speaker is providing an assertion or report. Call this the cognitivist stance of pain utterances. Nevertheless, many sentential pain utterances seem to have both assertive and imperatival communicative content in virtue of expressing both the speaker's pain belief and the pain experience, respectively. I call this view hybrid expressivism about pain. In this paper, I take the imperativist idea of pain seriously and show that, via an (...) expression relation, pain utterances inherit the imperative and motivational force of the pain. A hybrid expressivist stance better explains why pain utterances often have the perlocutionary effect of eliciting care from others, and it can provide a new understanding of what it means to silence one's pain. (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)

BackgroundThe evaluation of pain remains one of the most difficult challenges that healthcare practitioners face. Chronic pain appears to affect more than 35% of the population in the West, and indeed, pain is the most common reason patients seek medical care. Despite its ubiquity, studies in the last decades reveal that many patients feel their pain is dismissed by healthcare practitioners and that, as a result, they are denied proper medical care. Buchman, Ho, and Goldberg (J Bioethic Inq 14:31-42, 2017) (...) point to this phenomenon as a form of “epistemic injustice”: an unfair and harmful downgrading of credibility affecting some individuals and groups, which prevents them from receiving appropriate and beneficial medical care.MethodsBy exploring the existing literature on this downgrading of patients’ credibility written by healthcare professionals and scholars in medical humanities, I identify and examine the reasons patients are often not believed about their pain and why healthcare is too-often unhelpful or hurtful to people presenting with chronic pain. I also explore to what extent it is possible to forge an alternative epistemological model.ResultsI suggest that most of the causes of this downgrading of patient’s credibility result from either the difficulty in communicating pain or the widespread belief that pathology is always the result of objective tissue damage. I examine whether pain has to be effectively communicated and have an objective cause in order for it to be deemed credible. In the end, I argue that in the case of pain, both communication and objectivity are highly problematic.ConclusionsI conclude by suggesting that, although alternative epistemological models might be impossible to build, believing patients has both moral and clinical benefits, and this warrants further research. (shrink)

Digital phenotyping will potentially enable earlier detection and prediction of mental illness by monitoring human interaction with and through digital devices. Notwithstanding its promises, it is certain that a person’s digital phenotype will at times be at odds with their first-person testimony of their psychological states. In this paper, we argue that there are features of digital phenotyping in the context of psychiatry which have the potential to exacerbate the tendency to dismiss patients’ testimony and treatment preferences, which can be (...) instances of epistemic injustice. We first explain what epistemic injustice is, and why it is argued to be an extensive problem in health and disability settings. We then explain why epistemic injustice is more likely to apply with even greater force in psychiatric contexts, and especially where digital phenotyping may be involved. Finally, we offer some tentative suggestions of how epistemic injustice can be minimised in digital psychiatry. (shrink)

Background Chronic pain is a pervasive and invisible condition which affects people in a myriad of ways including but not limited to their quality of life, autonomy, mental and physical health, social mobility, and productivity. There are many ethical implications of neuroscience research on chronic pain, given its potential to reduce suffering and improve the lived experience of people in pain. While a growing body of research studies the etiology, neurophysiology, and management of chronic pain, it is unknown to what (...) degree neuroscience research in this area engages with relevant ethics concepts. Aim To explore the presence of ethics concepts in empirical chronic pain neuroscience literature to advance knowledge regarding the ethics of chronic pain management. Methods We conducted a hybrid bibliometric analysis and scoping review of chronic pain neuroscience articles published between 1999 and 2021 to identify the presence of ethics concepts. We selected articles from the top, middle, and bottom 20 neuroscience journals ranked by Impact Factor. We conducted a database search of Web of Science and a hand-search using PubMed, Google Scholar, and the reference lists of included articles. Findings Our database search yielded 2779 results from which 46 articles met inclusion criteria. An additional 13 articles were hand-retrieved using PubMed and Google Scholar in accordance with the inclusion criteria, totaling 59 articles. We identified four main ethics themes in our analysis: 1) Quality of Life (n = 46), 2) Autonomy (n = 5), 3) Transparency (n = 4), and 4) Beneficence and Non-Maleficence (n = 4). Conclusion Most neuroscience papers do not include a discussion of ethics related to chronic pain conditions. Those that do tend to merely state rather than define or contextualize a particular ethics concept. Given the potential ethical implications of neuroscience research for people living with chronic pain, we argue that to maximize its public health benefit, neuroscience researchers should consider the ethical relevance of their work within their scientific publications. This may generate further ethical reflection within the field, to improve pain management. (shrink)

I greatly appreciate the open peer commentary authors’ thoughtful engagement with my proposal to include a Citizens’ Jury (CJ) at the level of the International Commission when exploring ethical re...

In this paper, I take seriously calls for public engagement in human genome editing decision-making by endorsing the convening of a “Citizens Jury” in conjunction with the International Commission on the Clinical Use of Human Germline Genome Editing’s next summit scheduled for March 6–8, 2023. This institutional modification promises a more inclusive, deliberative, and impactful form of engagement than standard bioethics engagement opportunities, such as comment periods, by serving both normative and political purposes in the quest to offer moral guidance (...) on gene editing. In examining evidence from the Australian Citizens’ Jury on Genome Editing convened in 2021, I argue that Citizens’ Juries should work in tandem with governing institutions to preserve the role of expertise while ensuring that the diverse views of the public are incorporated into their final reports as well. First, early inclusivity allows “the people” to hold agenda setting power through helping to set resource priorities. This also makes a downstream deliberative event, such as the called for Global Citizens’ Assembly, both more likely to occur and more influential on policy. Second, Jury’s diverse composition promises substantive contributions to the Commission’s work. Third, Citizens’ Juries could help to cultivate the Commission’s trustworthiness. (shrink)

Machine learning (ML) systems play an increasingly relevant role in medicine and healthcare. As their applications move ever closer to patient care and cure in clinical settings, ethical concerns about the responsibility of their use come to the fore. I analyse an aspect of responsible ML use that bears not only an ethical but also a significant epistemic dimension. I focus on ML systems’ role in mediating patient–physician relations. I thereby consider how ML systems may silence patients’ voices and relativise (...) the credibility of their opinions, which undermines their overall credibility status without valid moral and epistemic justification. More specifically, I argue that withholding credibilitydue tohow ML systems operate can be particularly harmful to patients and, apart from adverse outcomes, qualifies as a form of testimonial injustice. I make my case for testimonial injustice in medical ML by considering ML systems currently used in the USA to predict patients’ risk of misusing opioids (automated Prediction Drug Monitoring Programmes, PDMPs for short). I argue that the locus of testimonial injustice in ML-mediated medical encounters is found in the fact that these systems are treated asmarkers of trustworthinesson which patients’ credibility is assessed. I further show how ML-based PDMPs exacerbate and further propagate social inequalities at the expense of vulnerable social groups. (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)

Chronic pain patients often miss receiving acknowledgement for the multidimensional struggles they face with their specific conditions. People suffering from chronic pain experience a type ofinvisibilitythat is also borne by other chronically ill people and their respective medical conditions. However, chronic pain patients face both passive and active exclusion from social participation in activities like family interactions or workplace inclusion. Although such aspects are discussed in the debates lead by the bio-psycho-social model of pain, there seems to be a lack (...) of a distinct interest in assessing more specifically the social aspects regarding chronic pain. As a result, the social aspects have yet to be taken into a more thorough theoretical consideration of chronic pain and to be practically implemented to help affected patients. By addressing chronic pain patients’ struggle for recognition, this paper attempts to shed light on some of these social aspects. We base this attempt on a theoretical framework that combines patients’ statements with an adaptation of Axel Honneth’s social-philosophical work onrecognition. Thus, this paper tries to make a suggestion on how the bio-psycho-social model of pain can live up to its name by helping to address more adequately some of the more neglected aspects in chronic pain patients’ suffering than has been possible to date. (shrink)

Artificial intelligence (AI) and machine learning (ML) systems increasingly purport to deliver knowledge about people and the world. Unfortunately, they also seem to frequently present results that repeat or magnify biased treatment of racial and other vulnerable minorities. This paper proposes that at least some of the problems with AI’s treatment of minorities can be captured by the concept of epistemic injustice. To substantiate this claim, I argue that (1) pretrial detention and physiognomic AI systems commit testimonial injustice because their (...) target variables reflect inaccurate and unjust proxies for what they claim to measure; (2) classification systems, such as facial recognition, commit hermeneutic injustice because their classification taxonomies, almost no matter how they are derived, reflect and perpetuate racial and other stereotypes; and (3) epistemic injustice better explains what is going wrong in these types of situations than does the more common focus on procedural (un)fairness. (shrink)

Uncertainty is inherent in new and unexpected viral outbreaks such as the current COVID-19 pandemic. It imposes challenges for health officials in soliciting cooperative behavioural changes based on incomplete information. In this paper, we use evolving mask recommendations in the United States as an example to analyse the ethical importance and practical demonstration of trustworthiness in pandemic messaging and decision-making. We argue that responsible public health interventions in the time of uncertainties requires explicit intersecting ethical considerations both in action and (...) in communication to promote trustworthiness. First, as public health decisions have to be made in the face of incomplete and evolving data, health officials need to exhibit competence while committing to epistemic humility. They can explain the methods used in making and updating mask recommendations as well as explicitly acknowledge the need to incorporate sociocultural and other contextual considerations in translating scientific data into mask recommendations. Second, officials and agencies must uphold and communicate decisional transparency as part of their effort to demonstrate accountability and promote the public’s understanding of the evolving pandemic. Third, especially since both the pandemic and mask recommendations may have disparate impact on different populations, officials should start with the fair implementation of the least restrictive measures that can help reduce harm. (shrink)

In this issue of the Hastings Center Report, Joshua Rager and Peter Schwartz suggest using opioid treatment agreements as public health monitoring tools to inform patients about “the requirements entailed by undergoing opioid therapy,” rather than as contractual agreements to alter patients’ individual behavior or to benefit them directly. Because Rager and Schwartz's argument presents suspected OTA violations as a justification to stop providing opioids yet does not highlight the broader epistemic and systemic context within which clinicians prescribe these medications, (...) their proposal may perpetuate a climate of distrust and stigmatization without correcting systemic factors that may have placed patients and others at risk in the first place. Given the context of epistemic uncertainty regarding opioid safety and efficacy, insufficient training for opioid prescribers, and inadequate patient education, I propose replacing OTAs, which have a narrow focus on patient behaviors, with opioid treatment plans, which would promote mutual, collaborative, and shared decision-making on the most appropriate pain management program. An OTP can be ethically justified as a tool to prevent and treat iatrogenic addiction under a specific paradigm—one that adopts a default position of professional epistemic humility and holds all collaborative parties accountable in chronic pain management. (shrink)

Lack of guidance and regulation for authorizing medical cannabis for conditions involving the health and neurodevelopment of children is ethically problematic as it promulgates access inequities, risk-benefit inconsistencies, and inadequate consent mechanisms. In two virtual sessions using participatory action research and consensus-building methods, we obtained perspectives of stakeholders on ethics and medical cannabis for children and youth. The sessions focused on the scientific and regulatory landscape of medical cannabis, surrogate decision-making and assent, and the social and political culture of medical (...) cannabis. We found that evidence-gathering and data dissemination, pressures on clinical relationships, and the lack of integration of culturally diverse perspectives and Indigenous knowledges were key areas of concern. Participants emphasized the importance of utilizing adaptive study designs, highlighted the importance of trust-building between clinicians, patients and caregivers, and discussed barriers including historical and ongoing stigmatization of medical cannabis. We conclude that continued public consultation and strength-based research that integrate diverse perspectives are critical steps forward. (shrink)

Self‐trust is essential to the well‐being of people with chronic illnesses and those who care for them. In this exploratory essay, we draw on a trove of health narratives to catalyze examination of this important but often overlooked topic. We explore how self‐trust is impeded at both personal and structural levels, how it can best be nourished, and how it is related to self‐advocacy. Because people's ability to trust themselves is intrinsically linked to the trust others have in them, we (...) pay particular attention to the role that allies such as clinical professionals play in the development of self‐trust, highlighting the importance of eliciting patient narratives, of curious listening, and of compassionately raising questions. We also contrast the self‐trust paradigm with that of self‐management, which tends to replace the former's attention to patients’ experiences, abilities, qualities, or judgments with a professionally dominated discourse dedicated to addressing illness through behavior changes prescribed by clinicians. We close with a call to action, exhorting readers to focus on supporting self‐trust in health care settings and on creative research in this critical yet heretofore underrepresented domain. (shrink)

This essay explores the long Western history of anxieties about feigned illness connected specifically to social policy. There is a remarkable consistency of such anxieties across time, as they appear in almost every major historical period in the West since the Middle Ages.

If funding allocation is an indicator of a field’s priorities, then the priorities of the field of bioethics are misaligned because they perpetuate injustice. Social justice mandates priority for the factors that drive systematic disadvantage, which tend not to be the areas supported by funding within academic bioethics. Current funding priorities violate social justice by overemphasizing technologies that aim to enhance the human condition without addressing underlying structural inequalities grounded in racism, and by deemphasizing areas of inquiry most frequently pursued (...) by Scholars of Color. This lack of attention to upstream determinants of health in bioethics research perpetuates a gap in the resources needed to understand the experiences of communities disproportionately experiencing poor health, which is itself a form of epistemic injustice. Both social and epistemic injustices are apparent in the impact of these funding priorities on people of color, both in the public and in the bioethics community. (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)

“Public Trust in Expert Knowledge: Narrative, Ethics, and Engagement” examines the social, cultural, and ethical ramifications of changing public trust in the expert biomedical knowledge systems of emergent and complex global societies. This symposium was conceived as an interdisciplinary project, drawing on bioethics, the social sciences, and the medical humanities. We settled on public trust as a topic for our work together because its problematization cuts across our fields and substantive research interests. For us, trust is simultaneously a matter of (...) ethics, social relations, and the cultural organization of meaning. We share a commitment to narrative inquiry across our fields of expertise in the bioethics of transformative health technologies, public communications on health threats, and narrative medicine. The contributions to this symposium have applied, in different ways and with different effects, this interdisciplinary mode of inquiry, supplying new reflections on public trust, expertise, and biomedical knowledge. (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 increasing use of opioid treatment agreements has prompted debate within the medical community about ethical challenges with respect to their implementation. The focus of debate is usually on the efficacy of OTAs at reducing opioid misuse, how OTAs may undermine trust between physicians and patients and the potential coercive nature of requiring patients to sign such agreements as a condition for receiving pain care. An important consideration missing from these conversations is the potential for racial bias in the current (...) way that OTAs are incorporated into clinical practice and in the amount of physician discretion that current opioid guidelines support. While the use of OTAs has become mandatory in some states for certain classes of patients, physicians are still afforded great leeway in how these OTAs are implemented in clinical practice and how their terms should be enforced. This paper uses the guidelines provided for OTA implementation by the states of Indiana and Pennsylvania as case studies in order to argue that giving physicians certain kinds of discretion may exacerbate racial health disparities. This problem cannot simply be addressed by minimising physician discretion in general, but rather by providing mechanisms to hold physicians accountable for how they treat patients on long-term opioid therapy to ensure that such treatment is equitable. There are no data in this work. (shrink)

When are we obligated to believe someone? To what extent are people authorities about their own experiences? What kind of harm might we enact when we doubt? Questions like these lie at the heart of many debates in social and feminist epistemology, and they’re the driving issue behind a key conceptual framework in these debates—gaslighting. But while the concept of gaslighting has provided fruitful insight, it's also proven somewhat difficult to adjudicate, and seems prone to over-application. In what follows, I (...) argue that Katherine Hawley's theory of trust can provide a useful alternative lens for looking at contested testimony. To do this, I focus on a particularly complex—but increasingly popular—application of gaslighting: the physician/patient relationship, and the idea of ‘medical gaslighting’. I argue that, even though patients can experience harm when they are disbelieved, there are nevertheless good reasons for physicians not to trust patients about at least some of their own narratives. (shrink)