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)

There will always be debates in medical ethics about whether any particular value can be considered foundational, but there are reasons for thinking that ‘trust’ is the ground upon which many other important values is built. Sisela Bok remarks: > If there is no confidence in the truthfulness of others, is there any way to assess their fairness, their intentions to help or to harm? How, then, can they be trusted? Whatever matters to human beings, trust is the atmosphere in (...) which it thrives.1 p31 The idea that trust in what others tell us is the bedrock on which human relationships and other values are built seems plausible, but how trust is created, nurtured and sustained is perhaps the challenge for medical ethics. Annette Baier noted that trust occurs within the context of a relationship of some sort, be that with another person or an institution. > “Trust me!” is for most of us an invitation which we cannot accept at will—either we do already trust the one who says …. (shrink)

People with disabilities are subject to multiple forms of health-related and wider social disparities; carefully focused research is required to inform more inclusive, safe and effective healthcare practice and policy. Through lived experience, disabled people are well positioned to identify and persistently pursue problems and opportunities within existing health provisions that may be overlooked by a largely non-disabled research community. Thus, the academy can play an important role in shining a light on the perspectives and insights from within the disability (...) community, and combined with policy decisions, these perspectives and insights have a better opportunity to become integrated into the fabric of public life, within healthcare and beyond. However, despite the potential benefits that could be yielded by greater inclusivity, in this paper we describe barriers within the UK academy confronting disabled people who wish to embark on health research. We do this by drawing on published findings, and via the lived experience of the first author, who has struggled for over 3 years to find an accessible PhD programme as a person with energy limiting conditions who is largely confined to the home in the UK. First, we situate the discussion in the wider perspective of epistemic injustice in health research. Second, we consider evidence of epistemic injustice among disabled researchers, focusing primarily on what philosophers Kidd and Carel (2017, p 184) describe as ‘strategies of exclusion’. Third, we offer recommendations for overcoming these barriers to improve the pipeline of researchers with disabilities in the academy. (shrink)

Patients in around 20 countries worldwide are now offered online access to at least some of their medical records. Access includes test results, medication lists, referral information, and/or the very words written by clinicians (so-called ‘open notes’). In this paper, I discuss the possibility of one unintended negative consequence of patient access to their clinical notes—the potential to increase ‘nocebo effects’. A growing body of research shows that nocebo effects arise by engaging perceptual and cognitive processes that influence negative expectancies, (...) and as a consequence, adverse health effects. Studies show that increased awareness about the side effects of medications, the framing of information and the socioemotional context of care can increase the risk of nocebo effects. Connecting research into the nocebo effect with open notes provides preliminary support for the hypothesis that patient access to clinical notes might be a forum for facilitating unwanted nocebo effects. Furthermore, current findings indicate that we might expect to see systematic differences in how nocebo effects are experienced among different patient populations. The ethical implications of the tension between transparency and the potential for harm are discussed, with an emphasis on what open notes might mean for justice and equity in clinical care for a range of already marginalised patient populations. I argue that to resolve these challenges does not thereby justify ‘closed notes’, and conclude with suggestions for how health systems and clinicians might adapt to this innovation to reduce the risk of potential nocebo effects arising via this novel route. (shrink)

Patient online record access (ORA) is spreading worldwide, and in some countries, including Sweden, and the USA, access is advanced with patients obtaining rapid access to their full records. In the UK context, from 31 October 2023 as part of the new NHS England general practitioner (GP) contract it will be mandatory for GPs to offer ORA to patients aged 16 and older. Patients report many benefits from reading their clinical records including feeling more empowered, better understanding and remembering their (...) treatment plan, and greater awareness about medications including possible adverse effects. However, a variety of indirect evidence suggests these benefits are unlikely to accrue without supplementation from internet-based resources. Using such routes to augment interpretation of the data and notes housed in electronic health records, however, comes with trade-offs in terms of exposing sensitive patient information to internet corporations. Furthermore, increased work burdens on clinicians, including the unique demands of ORA, combined with the easy availability and capability of a new generation of large language model (LLM)-powered chatbots, create a perfect collision course for exposing sensitive patient information to private tech companies. This paper surveys how ORA intersects with internet associated privacy risks and offers a variety of multilevel suggestions for how these risks might be better mitigated. (shrink)