Preparedness for Epistemic Fairness in Genetic Testing and Genomic Medicine

With the advent of scalable Next-Generation Sequencing (NGS) to identify disease-causing variants in patient DNA, the NHS is currently rolling out its nationwide genomic medicine service. Their hope is to re-orient the current service model towards personalised medicine, in which information about a patient’s genome is used to decide the most advantageous treatment options. 

The promise of genomic medicine extends beyond treatment: the hope is that this technology can be harnessed in a model of disease prevention, whereby genetic testing will be used to identify patients most at risk of developing diseases before symptoms appear. In the practical example of pharmacogenomics, a genetic test result can be used to predict whether a patient will respond quickly, slowly, not at all, or adversely to a given medication. Not only does this protect patients from adverse drug reactions (ADRs), but it’s also a way for the NHS to economise; ADRs cost the NHS an estimated 2.2 billion pounds a year to treat. 

The NHS is charging ahead with this technology, with the Accelerating Genomic Medicine Strategy full of cinematic language such as “ground-breaking”, “cutting-edge”, “world-leading” and “revolution”. Already, regional Genomic Medicine Alliances, Genomic Laboratory Hubs and the Genomics Education Programme are the new normal, and the offer of Whole Genome Sequencing (WGS) in “routine care” is expected to become commonplace. Clinical researchers are forensically weighing up the benefits and challenges of embedding genomics at the GP surgery, while nursing and midwifery have been targeted as key areas for genomic practice expansion.

But for how many people is genetics a concept that they studied during their GCSEs and haven’t thought about since? For how many more people, those without any level of science education, is it something they have never considered? And yet, the personalised medicine model proposes that patient care should henceforth be guided by complex genetic information which patients may or may not be fully equipped to engage with meaningfully. 

Re-orienting care towards genomics is not without risk of hermeneutical injustice, where a patient’s treatment plan is explained using terminology which is largely unfamiliar to them; patients therefore risk being excluded from making sense of their own experiences. The inverse could also be true: a clinician may perceive a patient as unable to understand the underlying logic of genetic test results and therefore feels inclined to withhold some or all of this information, resulting in informational prejudice. 

However, alongside this re-arrangement of service models, a quieter revolution is taking place: social scientists and ethicists valiantly work to keep up with each new technology as it’s approved and rolled out. The Wellcome-funded Ethical Preparedness in Genomic Medicine (EPPiGen) project (2017-2025) dissected social and moral dilemmas of wide-scale genomic medicine implementation. EPPiGen’s focus was on the use of creative and participatory methods to explore the experiences of families accessing genetic testing; the team’s compassionate studies warmly complement the proof-of-concept molecular research which genomics more typically brings to mind. 

When researchers, doctors and families work together, we can head-off ethical dilemmas caused by genomic medicine.

As more and more clinical care is guided by genomics going forward, it becomes crucial to assess the dangers of epistemic injustice as a barrier which may exclude patients from fully participating in decisions made about their healthcare. Just as genomics relies on cutting-edge DNA sequencing technology, it should also acknowledge the powerful perspectives that social scientists, philosophers and ethicists can offer. 

The genomic revolution calls upon GPs, nurses, pharmacists and other clinicians to re-train towards a sparkling new iteration of their roles: something akin to a genetic educator, in addition to the rest of their work remit. This makes sense, given that clinicians are the ones who will be explaining complex genomic concepts to patients. Will updated training support clinicians in communicating genomic concepts effectively, in order to mitigate the potential epistemic fallout of these conversations?

The NHS does indeed evangelise genomic medicine, and rightly so - after all, its benefits are both hugely evident and also yet to be fully realised. But amongst the increasingly impressive test printouts, it remains crucial not to lose sight of the patient perspective. Going forward, researchers and policymakers will need to work together to understand how to keep epistemic fairness at the heart of widescale genomics implementation. At the same time, clinicians must support patients in understanding the complex nuances of this new model of care, thereby protecting patients’ capacity to make informed treatment decisions.

Sophie Webb is a Research Associate in Psychology at the University of Birmingham, as well as a part-time Genomic Medicine student. She is interested in patient and practitioner experiences of genomics implementation in the NHS, particularly communication challenges in genetic counselling. Her other interests include neurogenetics, and patient and public involvement and engagement (PPIE) in lab-based molecular research. She would love to chat on Bluesky or LinkedIn!

The Dynamics of Epistemic Injustice: Situating Epistemic Power and Agency

Every day in the context of work, school, family, or social interactions, we are constantly using, producing, and transmitting information and knowledge: answering a question, proposing an idea, writing a paper, using concepts and representations to interpret our personal experience or describe social interactions. 

To put it in philosophical terms, we are exercising our epistemic agency: that is, we are doing various things (‘agency’) with knowledge (‘epistemic’), such as using it, producing it, transmitting it. We exercise our epistemic agency successfully when we are adequately believed and understood as a result: that is, when we receive appropriate levels of credibility and intelligibility. However, individual and societal biases – related to our social identity, for instance – can interfere with the exercise of our epistemic agency. 

For example, someone may not believe me or fail to recognize my competence and abilities because I am a woman (i.e., I might receive diminished levels of credibility because of my interlocutors’ conscious or subconscious gender biases); or it might be difficult for me to convey my experience of disability because mainstream interpretive tools, such as concepts and social representations of disability, are inadequate to capture this marginalized experience, which as a result might remain largely misunderstood or misrepresented (i.e., I might receive diminished levels of intelligibility because of societal biases regarding disability in the mainstream pool of interpretive resources). 

Some individuals are given less credibility due to some feature of their identity (e.g. their gender) and this impacts their epistemic agency.

When individual or societal biases give rise to these sorts of credibility and intelligibility deficits, the person thereby faces epistemic injustice. Epistemic injustice is problematic because it undermines individuals’ exercise of their epistemic agency, or their capacity to use, produce, or transmit knowledge, which is central to our everyday lives, interactions, and exchanges.

The foregoing is a very brief and therefore very general glimpse of the large literature on epistemic injustice that has developed since the publication of Miranda Fricker’s 2007 book, which introduced the term ‘epistemic injustice’. My new book, titled The Dynamics of Epistemic Injustice: Situating Epistemic Power and Agency, makes three main contributions to this important literature on epistemic injustice and agency.

As the above suggests, the literature has so far focused on propositional knowledge and verbal modes of expression: oral or written contributions, the (lack of) production, use, or understanding of certain concepts, and so on. Philosophers, however, also recognize other kinds of knowledge besides propositional knowledge (or knowing that), namely non-propositional or experiential knowledge, including practical knowledge (or knowing how) and tacit, embodied, or affective knowledge (or knowing what it’s like). 

The cover of Amandine Catala's
The Dynamics of Epistemic Injustice:
Situating Epistemic Power and Agency.

Yet very little has been said about the non-propositional dimensions of our epistemic agency, or about non-propositional forms of epistemic injustice. This is the first contribution of my book: it provides a pluralist account of knowledge, epistemic agency, and epistemic injustice that takes into account not only their propositional but also their non-propositional aspects.

The second contribution of the book is that it provides a systematic account of epistemic agency and epistemic power. The literature often asserts that epistemic injustice is problematic because it undermines epistemic agency, and that epistemic injustice involves differential allocations of epistemic power. But the literature says almost nothing about what exactly epistemic agency and epistemic power are. Yet many fascinating and crucial questions arise if we want to grasp these two notions more precisely. 

The book offers a systematic account of epistemic agency that specifies its objects, expressive modes, contributing factors, and different stages, as well as a systematic account of epistemic power that identifies three types of epistemic power along with their various sites and mechanisms at both the individual and the structural levels.

Finally, the third contribution of the book is that it starts from case studies that bring up new forms of epistemic injustice. These case studies include deliberative impasses in divided societies, colonial memory, academic migration, the underrepresentation of members of non-dominant groups in certain fields, the marginalization of minoritized minds like intellectually disabled people, and the underdiagnosing of autistic women. 

Examples of the new forms of epistemic injustice that these case studies reveal include meta-epistemic injustice, testimonial domination, hermeneutical domination, meta-epistemic filtering, linguistic epistemic injustice, and existential hermeneutical injustice, among others.

Together, these three contributions yield a more complete and precise picture of epistemic injustice, power, and agency, thereby equipping us to more effectively and thoroughly address problematic yet transformable dynamics of epistemic injustice.

Amandine Catala is a Full Professor in the Department of Philosophy at Université du Québec à Montréal (UQAM), where she holds the Canada Research Chair on Epistemic Injustice and Agency. She is a Senior Research Associate at the African Centre for Epistemology and Philosophy of Science at the University of Johannesburg. Her research interests include epistemic injustice and agency, epistemic repair, neurodiversity, linguistic justice, and decolonization. Her book, The Dynamics of Epistemic Injustice: Situating Epistemic Power and Agency, was published by Oxford University Press in 2025.

Epistemic Injustice in the Mental Healthcare of Indigenous Peoples

Today's post is by Md Omar Faruk.

Symbol of healing

Philosopher Miranda Fricker coined the term epistemic injustice to refer to the harm experienced by people when their ability and capacity as knowers of knowledge is disregarded or devalued in a unfair fashion (Fricker, 2007). Essentially, we are referring to individuals who have been harmed in the process of co-creating and sharing knowledge, and whose capacity to reason and contribute as knowers has been dismissed or denied. 

People experience this injustice in two ways: testimonial injustice and hermeneutical injustice. Testimonial injustice takes place when the testimony of a person or group of people is deemed less credible. Simply put, the collective accounts of people are being denied on the pretext of not having substantial credibility or reliability. On the other hand, the absence of social understanding that helps conceptualize the experiences of a person or a group of people is at the heart of hermeneutical injustice. When we do not have sufficient conceptual resources be it understanding of the concepts or language to uncover the experiences, this paves the way for hermeneutical injustice. 

Both form of injustices has adverse impact on people’s self-esteem, social positioning, and ability to engage in creating knowledge. People representing minoritized and less advantaged groups are more vulnerable to these injustices leading to both physical and mental health consequences. By taking Bangladesh as an example, in this blog post, I shed light on how these injustices are contributing to the poor mental health status of Indigenous peoples and I present a framework to address them with a view to improving their mental health outcomes (Faruk, 2025).

Indigenous peoples in Bangladesh, particularly those living in the Chittagong Hill Tracts, experience distinctive challenges related to mental health due to historical, systemic, and cultural factors. These communities experience higher risks of mental health problems stemming from the legacy of colonialism, marginalization, language loss, cultural infiltration, land grabbing, and lack of access to adequate healthcare services including mental healthcare. Despite nationwide initiatives aimed at improving mental health awareness and reducing stigma, there has been little targeted effort to address the specific mental healthcare needs of Indigenous peoples in Bangladesh. 

Bangladesh

Their mental health experiences include anxiety, depression, and widespread stigma centering mental illness, all of which witnessed a significant increase during the COVID-19 pandemic. Nevertheless, Indigenous peoples’ perspectives and experiences are often excluded from mainstream mental health policies and services, contributing to epistemic injustices that further marginalize these groups. To address these injustices community-led, culturally sensitive interventions, increased engagement of Indigenous communities in policymaking, and the incorporation of Indigenous knowledge systems are crucial to improve mental health outcomes and achieve epistemic justice for these communities. 

Kaptai Lake

The key components of the framework are listed below:

• Community Engagement and Participatory Approaches: The current mental healthcare system in Bangladesh does not integrate community voices and encourage participation of Indigenous peoples which may contribute to the non-compliance on the traditional mental healthcare service systems. Therefore, engaging Indigenous communities primarily through consultations, focus groups, and participatory research to include their voices in the design and implementation of mental healthcare services is extremely important. This not only promotes mutual learning but ensures that services are tailored to their unique cultural context.

• Partnering with Indigenous-Led Organizations: To facilitate self-determined practices and promote Indigenous epistemologies in the development of mental healthcare programs, collaborating with organizations led by Indigenous peoples is crucial. This ensures the integration of cultural nuances that shape the distinct conceptualization of mental health and illness and paves the way for utilizing Indigenous healing practices.

• Utilizing Indigenous Healing Practices: Recognizing and incorporating traditional healing methods alongside mainstream mental healthcare interventions ensures cultural relevance potentially leading to acceptance. Growing evidence suggests that integrating Indigenous healing practices within clinical practices promotes culturally safe environments (Beaulieu & Reeves, 2022).

• Decolonial and Culturally Responsive Approaches: Mental healthcare programs aimed at respecting and valuing Indigenous epistemologies, promoting self-determination, and facilitating the use of Indigenous languages and practices may promote the deconstruction of colonial practices putting more emphasis on culturally responsive approaches.

• Training Mental Health Professionals: It is imperative that mental health professionals have adequate cultural competence and sensitivity to better understand and respect Indigenous beliefs, practices, and worldviews in an effort to to deliver more tailored and respectful care.

• Incorporating Indigenous Knowledge into Policy and Education: Indigenous people’s worldviews embedded into educational curricula, policy frameworks, and advocacy initiatives has the potential for systemic acknowledgment and supporting Indigenous ways of knowing in mental healthcare services.

These strategies intend to recognize Indigenous knowledge as a vital component of mental healthcare, promoting epistemic justice and ensuring that services are culturally sensitive and effective for Indigenous peoples in Bangladesh and beyond.

Md Omar Faruk is a clinical psychologist in Bangladesh is currently pursuing his PhD in School Psychology at the Louisiana State University in the US. 

His research focuses on understanding Indigenous people’s mental health experiences including the development of culturally sensitive mental healthcare interventions. 

Additionally, Faruk focuses on the promotion of positive school climate by strengthening student-teacher relationships contributing to the improved student social, emotional, and academic outcomes as well as increased well-being for teachers.