The literature on epistemic injustice has thus far confined the concept of testimonial injustice to speech expressions such as inquiring, discussing, deliberating, and, above all, telling. I propose that it is time to broaden the horizons of testimonial injustice to include a wider range of expressions. Controversially, the form of communication I have in mind is non-verbal expression. Non-verbal expression is a vital, though often overlooked, form of communication, particularly for people who have certain neurocognitive disorders. Dependency upon non-verbal expression (...) is a common feature of some forms of neurocognitive disorders such as ‘intellectual disabilities’, autism and late-stage dementia. According to the narrow definition of testimonial injustice currently championed in the literature, people who express non-verbally are exempt from testimonial injustice. However, when we consider cases where meaningful communications from non-verbal people are dismissed or ignored in virtue of identity prejudice, there seems to be a distinct testimonial harm at play. Using late-stage dementia as a case study, I argue that the definition of testimonial injustice should be expanded to include all communicative practices, whether verbal or non-verbal, to encompass the epistemic harms inflicted upon some of the most marginalised in our society. (shrink)

Menschen mit psychischer Erkrankung sterben statistisch gesehen früher als die Allgemeinbevölkerung. Ein Grund hierfür ist, dass sie eine schlechtere somatische Gesundheitsversorgung erhalten. Wir argumentieren, dass ableistische Netzwerke sozialer Bedeutung zu einer Abwertung der epistemischen Kompetenz von Menschen mit psychischer Erkrankung führen. Diese Abwertung kann mit dem Konzept der testimonialen Ungerechtigkeit erfasst werden. Testimoniale Ungerechtigkeit bezeichnet das ungerechtfertigte Herabstufen der Glaubwürdigkeit einer*s Sprecher*in aufgrund eines Vorurteils gegen ihre*seine soziale Identität. Wir analysieren ethische und epistemische Folgen testimonialer Ungerechtigkeit als wichtige Ursachen der (...) schlechteren Gesundheitsversorgung von Menschen mit psychischer Erkrankung. Testimoniale Ungerechtigkeit kann zu medizinischen Behandlungsfehlern führen und für Betroffene schwerwiegende gesundheitliche Folgen nach sich ziehen. Zudem kann sie zu einem Vertrauensverlust von Menschen mit psychischer Erkrankung in das Gesundheitssystem führen. Daher trägt testimoniale Ungerechtigkeit zur strukturellen Diskriminierung von Menschen mit psychischer Erkrankung bei. Vor diesem Hintergrund diskutieren wir, wie die somatische Gesundheitsversorgung unter ethischen Gesichtspunkten verbessert werden kann. (shrink)

This contribution sets out to criticize the prominent metaphor of “death while alive” in the context of dementia. We first explain the historical origin and development as well as the philosophical premises of the image. We then take a closer look at its implications for understanding dementia and societal attitudes and behaviours towards those affected. In doing so, we adopt a life course perspective that seeks to account for the ethical significance of the temporal extension and structure of human life. (...) According to this perspective, individual existence in time is characterized by normative standards of age-appropriate behavior, evaluative standards of a good life, and teleological notions of successful development which require theoretical analysis and ethical discussion. Such a perspective can contribute significantly to spelling out the implications of the metaphor of death while alive and to criticizing their problematic aspects. Indeed, it makes clear that this metaphor aligns dementia with a different point in the human life course, thus ultimately framing it as a kind of deviation from the biographical norm, a disruption in an assumed temporal order of existence. At the same time, the life course perspective can help to understand why this conception involves ethically problematic distortions and blind spots. The resulting considerations allow conclusions with regard to medical and care ethical debates about self-determination, surrogate decision making, and advance directives in the context of dementia. Furthermore, on a theoretical-conceptual level, they also illustrate the importance of a biography- and culture-sensitive approach to philosophical and ethical reasoning in biomedicine and the life sciences. (shrink)

With the increasing attention paid to patient participation in both health care policy-making and health care research, McCoy and colleagues (2020) point to a key ethical issue, namely the quest fo...

Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons”. We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.

In this paper, my goal is to use an epistemic injustice framework to extend an existing normative analysis of over-medicalization to psychiatry and thus draw attention to overlooked injustices. Kaczmarek has developed a promising bioethical and pragmatic approach to over-medicalization, which consists of four guiding questions covering issues related to the harms and benefits of medicalization. In a nutshell, if we answer “yes” to all proposed questions, then it is a case of over-medicalization. Building on an epistemic injustice framework, I (...) will argue that Kaczmarek’s proposal lacks guidance concerning the procedures through which we are to answer the four questions, and I will import the conceptual resources of epistemic injustice to guide our thinking on these issues. This will lead me to defend more inclusive decision-making procedures regarding medicalization in the DSM. Kaczmarek’s account complemented with an epistemic injustice framework can help us achieve better forms of medicalization. I will then use a contested case of medicalization, the creation of Premenstrual Dysphoric Disorder in the DSM-5 to illustrate how the epistemic injustice framework can help to shed light on these issues and to show its relevance to distinguish good and bad forms of medicalization. (shrink)