Wednesday, 28 May 2025

Tackling Hermeneutical Injustices in Gender-Affirming Healthcare

As any trans person will tell you, it is a scary time to be living in the UK. One reason is that gender-affirming healthcare is becoming increasingly hard to access. In December 2024 the Health Secretary made a ban on prescribing puberty blockers to trans adolescents permanent, following the recommendation of the deeply flawed Cass Review. This ban has been criticised by several relevant professional bodies, diverges significantly from the consensus on best practice in peer countries, and flies in the face of decades-long histories of these drugs’ safe and effective use.


Two intertwined hands, one white, one brown. A ribbon in the trans pastel colours loops around them.
                                               
           


As a result, trans adolescents are being forced against their wills to undergo puberties distressingly at odds with their gender identities. Simultaneously, trans adults hoping to access gender-affirming healthcare from the NHS are being made to wait several years for their first appointment at a Gender Identity Clinic (GIC). These long wait times are taking a considerable toll on their mental and physical health. Moreover, convincing the relevant doctors at a GIC of their need for gender-affirming healthcare is no longer always sufficient since some GPs are unilaterally refusing or reversing GICs’ recommendations to prescribe hormones to their trans patients.


  A packet of oestrogen pills.


Trans identity and hermeneutical injustice

In addition, convincing the relevant doctors at a GIC of their need for gender-affirming healthcare is not always easy. Doing so is a matter of a patient rendering it intelligible to these (usually cis) doctors that they are indeed trans. This can prove difficult when the relevant doctors employ overly-narrow conceptions of transness. For instance, gay patients sometimes struggle to render their transness intelligible to doctors who assume that to be trans is necessarily to be straight. 

Similarly, non-binary patients sometimes struggle to render their transness intelligible to doctors who assume that to be trans is necessarily to identify as either a trans man or a trans woman. Moreover, that doctors sometimes work with such overly-narrow conceptions is a result at least in part of trans people having been deprived of opportunities to shape how people think about transness. In sum, trans adults sometimes suffer hermeneutical injustices when attempting to access gender-affirming healthcare from the NHS.

What can be done?

What should be done to prevent such hermeneutical injustices? In a recent paper, I distinguish between two sorts of strategy that might be pursued to this end. Interests-as-given strategies would take for granted trans patients’ interests in it being intelligible to the relevant doctors that they are indeed trans, and aim only to enable them to satisfy these interests. For instance, we might look to educate the relevant doctors or to engage in political activism aimed at propagating better-fitting conceptions of transness. 



Two people, one with fist raised, one waving a flag in trans pastel colours.


All previously proposed strategies for preventing hermeneutical injustices are of this sort, yet it is sometimes possible to go about preventing hermeneutical injustices very differently. An interests-in-question strategy would instead look to do away with trans patients’ interests in it being intelligible to the relevant doctors that they are indeed trans, and thus with the possibility of these interests’ unfair nonsatisfaction. 

Consider that trans patients only have these interests in the first place because the prevailing gatekeeping model makes it a requirement on the provision of gender-affirming healthcare that trans patients first convince the relevant doctors at a GIC of their need for it. I argue on grounds of trust, privacy, and respect that the NHS ought to cease making this a requirement. One way to do so would be by switching to an informed consent model, under which pretty much all that a well-informed adult capable of consent would have to do to access gender-affirming healthcare would be to ask for it – an example of a more materialist strategy for preventing hermeneutical injustices. 

Unfortunately, in a time of intense anti-trans backlash it seems unlikely that the NHS will make such a progressive move anytime soon. We thus may need to think about what else can be done to prevent such hermeneutical injustices in the unjust meantime.



Nick Clanchy is a Postdoctoral Research Fellow with a joint appointment at the Canada Research Chair on Epistemic Injustice and Agency (UQAM) and Le Centre de Recherche en Éthique (UdeM) in Montréal, where they are also a member of the philosophy department at McGill.

Most of Nick's work is dedicated to thinking about hermeneutical injustices. They also have research interests in trans philosophy, the philosophy of love, and the work of a number of figures on the margins of philosophy - especially Roland Barthes. 

More about Nick and their work can be found here.

Wednesday, 21 May 2025

Epistemic injustice in global antimicrobial resistance research

Today's post comes from Phaik Yeong Cheah at the Mahidol Oxford Tropical Medicine Research Unit, Faculty of Tropical Medicine, Bangkok, Thailand, and Nuffield Department of Medicine, University of Oxford, Oxford, UK. This post summarises her recent co-authored paper "Tracing epistemic injustice in global antimicrobial resistance research".


A petri dish of microbes, bacteria and other microscopic organisms in a 2-dimensional, cartoon style.


Introduction

Antimicrobial Resistance (AMR) arises when microorganisms such as bacteria, viruses, fungi, and parasites become resistant to the medicines used to treat them. This makes infections harder or impossible to treat and increases the risk of disease spread, severe illness, and death. AMR affects everyone but disproportionately harms disadvantaged and marginalized populations. Despite this, the experiences, data, and voices of these communities are often excluded or overlooked in AMR research.

Epistemic Injustice and AMR Research 

This paper focuses on epistemic injustice in AMR research—questions such as what causes AMR, who is most affected, what drives AMR, and what can be done to mitigate it. This form of injustice contributes to a lack of representation, skewed priorities, and blind spots in global AMR efforts. We identify three overlapping domains where epistemic injustice occurs and emphasize the need to include diverse perspectives and community voices to make AMR research more inclusive, equitable, and effective. This work is part of a broader project exploring justice in the context of AMR.

Firstly, who sets global AMR research priorities? One key area where epistemic injustice arises in AMR research relates to how global AMR research priorities are set. These priorities are largely determined by the WHO and international funding bodies that support AMR research globally. However, priority-setting exercises rarely include substantive representation from people in low- and middle-income countries (LMICs)—whether they be researchers, clinicians, policymakers, or affected communities.


A researcher looks into a microscope at their desk, with petri dishes on the table.


Secondly, who produces, interprets, and uses AMR knowledge? While AMR disproportionately affects people in LMICs, research in this field is largely dominated by academics from high-income countries and a small number of disciplines. Additionally, researchers from low-resource settings face significant barriers to publishing in high-impact journals. Language challenges hinder their ability to produce competitive manuscripts, and limited access to protected, paid research time constrains their capacity to write. This imbalance perpetuates epistemic injustice in two ways: it limits opportunities for LMIC researchers to shape global AMR knowledge, and it sidelines valuable experiences, knowledge, and potential interventions that could emerge from these settings.

Finally, what knowledge is currently available and valued? A major gap in AMR research is the lack of data from LMICs, particularly in medically underserved areas and communities. This can lead to surveillance strategies that are unrepresentative of the populations they aim to serve. Significant data gaps or biases in AMR prevalence hinder reliable estimates, especially in regions with limited laboratory capacity and data collection systems, potentially resulting in inappropriate responses. There is also a lack of data on health-seeking behaviors, health practices, and medication use in many marginalized or vulnerable communities worldwide.


A woman walks across the spine of a book, which has a puzzle piece removed by a giant hand. A man walks up the stairs at one end of the book, which a man descends another set of stairs at the other end.


Consequences of Epistemic Injustice in Global AMR Research 

Epistemic injustices in AMR research create "blind spots". These include a dominant focus on high-income countries, hospital-based interventions, and drug development, while critical LMIC issues—such as infection burden, antibiotic use in livestock, prescribing practices in primary care, and access to affordable diagnostics—are overlooked. These imbalances can also lead to unintended consequences. For example, malaria rapid diagnostic tests have increased antibiotic use in some countries, and AMR awareness campaigns have sometimes instilled fear or unfairly stigmatized small-scale farmers.

Suggestions for the Way Forward 

To address epistemic injustice in global AMR research, we recommend inclusive agenda setting with diverse representation across geography, disciplines, and gender. Research should include under-served populations, removing barriers to participation and recognising their agency. Community engagement around AMR should be encouraged to ensure the voices of affected communities are heard.


Phaik Yeong Cheah is a Professor of Global Health at the University of Oxford. She co-leads a project funded by the British Academy (GCPS2\100009), ‘A Just Transitions Framework for The Equitable and Sustainable Mitigation of Antimicrobial Resistance’ project.

Wednesday, 14 May 2025

Agential epistemic injustice is bad for medicine

On occasion of Mental Health Awareness Week 2025 (in the UK 12-18th May and in other European countries 19-25th May), I suggest that some forms of epistemic injustice may prevent mental health interactions from fulfilling their clinical goals, and thus need to be identified and avoided not just for moral reasons but to enhance clinical practice. I offer this argument in a paper recently published open access in Philosophy of Medicine. 


Youth mental health


What is agential epistemic injustice?

Medina has identified a phenomenon called "agential epistemic injustice" which occurs when the exercise of epistemic agency in people from marginalised groups is  constrained,  manipulated,  or  distorted. A speaker does not need to be silenced for epistemic injustice to occur. The speaker's contribution to a conversation or to an epistemic project can be actively solicited. However, if their contribution is then challenged or reconstrued by the listener, without being first explored in its own right, there is still a problem. This "failed uptake" is often due to the speaker's agency being called into question. 

I believe that the notion of agential epistemic injustice is especially apt to capture problems with interactions involving people who are experiencing a mental health crisis because the stigma associated with poor mental health tends to target people’s epistemic agency. When people struggle with their mental health, it is assumed that their agency is compromised, and their capacities for rational thought, appropriate affect and mood, competent decision-making, and autonomous action are negatively affected by their health condition.


Failed uptake


What are the effects of agential epistemic injustice?

Recent qualitative studies of communication between practitioners and young people accessing mental health emergency services (Bergen et al. 2023) suggests that the young people's reports are not always validated  and  explored. Instead, practitioners sometimes fail to legitimise the young person's concerns and imply that their descriptions of the way they feel is inaccurate or inconsistent with previous medical notes or observable data. Statements  that support the practitioner’s view are accepted and integrated in a narrative explanation of the situation that goes on to inform the decision-making  process. But statements that are in tension with the practitioner’s view are undermined. 

These challenges often compromise the quality of the exchange, with young people gradually withdrawing and reducing their engagement. Everyone may agree that validating and exploring patient reports may have a positive psychological impact on patients. But some have argued that such benefits come at a cost, and that epistemic justice in clinical interactions may be an obstacle to improving health outcomes for patients. This surprises me, because I have come to think of the avoidance of agential epistemic injustice not just as "a nice to thing to do" or as what morality demands, but as a way to increase the chance that the medical goals of the clinical interactions are met.

A clinical interaction is successful when it leads to
  1. understanding the nature of the problem the person is seeking support for;
  2. identifying the best means of support for the person experiencing the problem; and
  3. promoting favourable conditions for the person to address the problem via those means.
Clinical interactions characterised by agential epistemic injustice are less likely to achieve (1)-(3). I offer two arguments for this conclusion. 

Knowledge argument: 
  • A genuine exchange of information enables knowledge about the person’s experiences to be shared, including knowledge about how a mental health issue is affecting the person's life. 
  • Agential epistemic injustice may prevent a genuine exchange of information from happening, leading to practitioners offering a premature diagnostic label or suggesting treatment options that are based on partial information and thus turn out to be misguided or ineffective.
Trust argument:
  • When patients’ experiences and concerns are not considered as valuable contributions to the exchange, this may contribute to their feeling incompetent and losing trust in themselves. 
  • If the practitioner treats patients just as a diagnostic puzzle to solve, this may suggest that the practitioner is not interested in what they are experiencing or is unwilling to explore their concerns further. 
  • Agential epistemic injustice negatively affects the capacity patients have to address the problems they have via the means identified in the interaction: the patient may feel disempowered and helpless and medical advice is less likely to be perceived as something worth following and, if another crisis is experienced, people may be reluctant to seeking support again. 

Good communication in a clinical interaction


Agential epistemic injustice as an obstacle to good medicine

To sum up, lack of information due to reduced engagement may compromise diagnosis and render suggestions for further support irrelevant or unlikely to be taken up. Moreover, making people feel inadequate, unable to report their own feelings in a coherent or persuasive way, may cause them to doubt their own capacity to help themselves and get better. The impression that practitioners are not interested in what happened to them may also interfere with people's willingness to access services again, and their trust in medical advice, potentially compromising adherence.

In an interaction whose goals can be met when all participants make a genuine epistemic contribution, practices characterized by agential epistemic injustice are not just morally problematic but they constitute an obstacle to the interaction achieving its goals. Clinical interactions are no different.

Wednesday, 7 May 2025

Why Disabled Voices Must Be Central to Health Research

Hidden disabilities sunflower lanyard.


Disabled people can experience profound health disparities. Yet, while these inequities are well-documented, one key question remains under-asked: who is conducting the research meant to address them?

In our paper, published in the Journal of Medical Ethics, we argue that the health research community must urgently confront a gaping omission - the absence of disabled researchers from within its own ranks. This exclusion, we contend, constitutes a form of epistemic injustice. Without the voices of disabled scholars at the table, how can we claim to fully understand, let alone solve, the very issues that affect them?

Epistemic injustice, a term first introduced by Miranda Fricker (2007), refers to a wrong done to someone in their capacity as a knower - denial of credibility or the opportunity to contribute knowledge. When disabled people are systemically excluded from academic research, their perspectives, insights, and lived experiences are undervalued or erased entirely. This leads to skewed understandings of disability and results in research, policy, and clinical practice that fail to capture the complexity of disabled lives.

The lack of representation is not accidental. Across the UK academy, structural and attitudinal barriers persist: inaccessible environments, discriminatory hiring practices, and a pervasive lack of institutional support. The “pipeline” for aspiring disabled health researchers is fractured at every level, from education through to recruitment, career progression, and funding. Often, disabled individuals must fight battles on multiple fronts just to gain access to a field that should be enriched by their insight.


                                    Three women and one child. One woman in a wheelchair. Woman in wheelchair and one other woman carry flags. All three women have raised fist.


We believe this silence has serious consequences. Disabled people are routinely positioned as objects of study, but rarely as agents of research. Their lived expertise is essential, not optional. Research that is truly inclusive and ethically grounded must involve those with direct experience of the issues at hand. Anything less reinforces the very inequalities we purport to address.

What needs to be done?


The good news is that change is possible. Academic institutions must take deliberate steps to dismantle these barriers - not through tokenism, but through genuine structural reform. Accessibility must be embedded into the fabric of research environments. Recruitment strategies must be inclusive by design. Mentorship and funding opportunities must actively support disabled scholars.

We also call on funders and policymakers to recognise the urgency of this issue. Resources should be directed towards diversifying the research community including supporting disabled-led research and scholarship that challenges dominant, often medicalised, narratives of disability.


Female doctor in wheelchair carrying out research on laptop.


Ultimately, we wrote this paper not just to critique the status quo but to imagine a better future: one in which disabled scholars are central to health research, shaping agendas, asking the right questions, and leading the work that affects their own communities. When research includes disabled voices, it becomes more accurate, more ethical, and more impactful.

We must fix the pipeline - not only to advance equity, but because the future of health research, and the well-being of the most overlooked population in society, depends on it.


Headshot of Charlotte Blease (PhD)

Charlotte Blease (PhD) is an Associate Professor at Uppsala University. She is a health informaticist whose research spans philosophy, psychology, cognitive science and medical humanities. She is co-author of The Nocebo Effect: When Words Make You Sick. More about her research can be found here.


Headshot of Joanne Hunt (MSc, MBACP, GMBPsS)
Joanne Hunt (MSc, MBACP, GMBPsS) is a disabled researcher with a background in psychological therapies. Her interdisciplinary research is sited at the intersection of disability studies, psychology, feminist studies and ethics, and includes the biopolitics of medically and societally ‘contested’ chronic illness and related disability. More about her research can be found here.





For more on ableism in academia see Brown, N (2021) and Brown, N & Leigh, J (2020).