Epistemic Trust Injustice and Distrust in Public Health: Amelioration Strategies

In today's post, Elena Popa summarises a talk she gave as part of the pre-conference workshop “Epistemic Injustice in Healthcare” at the Nova University Lisbon. You can see the list of speakers here.

Trust plays a key role in public health. The success of guidelines and recommendations requires a trusting relation between the scientists making claims about the efficiency of interventions, policymakers and members of the public. Even on the best available evidence and policy design, public health interventions can fail if the levels of trust are insufficient. 

The example of vaccine uptake is particularly illustrative: distrust is an important driver of vaccine hesitancy and if such attitudes are present among a significant part of the population, this can undermine the aim of achieving sufficient levels of immunity within a population to prevent further infection. Similarly, guidelines regarding lifestyle, diet or other kinds of medical advice are less likely to be heeded in a context of distrust.

While there are several sources of distrust, my interest will be on the connection between distrust and epistemic injustice and the challenges it brings to public health and health sciences more broadly. The link between distrust and injustice has been pointed out in political context. As the scientific establishment also functions within a socio-political context such patterns of injustice and oppression can also spill over in scientific practice. 

This, in turn, yields warranted distrust in members of groups that have suffered oppression. Examples include unethical practices in medical research that have affected members discriminated on ethno-racial grounds or the neglect of women when investigating particular health conditions, such as heart disease or illnesses that do not have a clear link to fertility.

While the connection between injustice and distrust embodies a multitude of factors, including material and social ones, there is an important epistemic dimension to highlight. Particularly, if oppressed groups have good reasons to distrust scientific institutions or healthcare providers, these groups are also harmed in their capacity as knowers. 

The term ‘epistemic trust injustice’ thus refers to cases where the conditions that ground public trust in experts, or enable public access to scientific knowledge, are not met for members of oppressed groups. This kind of epistemic injustice is particularly harmful for the members of oppressed groups because it further limits access to needed health services or relevant medical knowledge. Furthermore, from a population-level perspective, the resulting distrust can exacerbate existing health disparities, making it more difficult to act so as to improve overall health.

How can this type of epistemic injustice be ameliorated? One thing to clarify is that solutions looking particularly at health research and healthcare also require improvements in social justice in the background. That is to say, scientific and healthcare institutions are moving away from or, ideally, completely eliminating, historically oppressive practices that have given rise to distrust. 

Assuming this background, more specific solutions involve acknowledging and highlighting structural factors leading up to health disparities, providing health professionals with skills to spot them when working with patients and engage in advocacy, and incorporating input from patients with relevant backgrounds.

First, taking a more population-focused approach in public health, particularly around social determinants of health and upstream causes of illness, would emphasize issues such as poverty, experiences of discrimination or oppression, lack of access to education or decent living conditions. Not only are all of these relevant for health outcomes, but they are more likely to affect vulnerable segments of the population, thus drawing attention to issues experienced by discriminated groups rather than focusing on the needs of better off groups that can access healthcare or expensive treatments with more ease. 

Furthermore, as these problems are more effectively approached through population-based interventions, this perspective is also likely to address health disparities as they do not require conditions that are unlikely to be met among oppressed groups. Through its explicit incorporation of problems likely to affect previously oppressed or excluded groups, this approach may also increase trust with time.

Second, medical and public health practitioners can play an important role in this perspective, as they can recognize patterns of epistemic trust injustice when interacting with patients. As opposed to placing the responsibility on the patients to acquire more knowledge about, e.g., vaccination or asking for blind trust from patients, which is common, health practitioners could acknowledge the problems faced by their patients and advocate for addressing them at the level of society or the health system. The skill of structural competence can enable this shift in practice.

Nevertheless, leaving the solutions to scientists and healthcare professionals is insufficient. Input is further needed by those most likely to be affected by how public health science and health policy are conducted. This can be done, for instance, though patient activism or activism from groups whose health problems have been neglected. Input from such groups can generate epistemic resistance, challenging existing frameworks and producing epistemic resources better suited for spelling out the health needs of oppressed groups.

A final point to stress is that these proposals for ameliorating epistemic trust injustice are not without pitfalls. They are all entangled with further political dynamics; it is possible that some solutions can be hijacked to tip the balance in favor of more influential groups. In order to counter that, a further condition, together with the move towards a more just society, is the closer integration of the goals and activity of experts with those of the patients and the public at large. Thus, ameliorating epistemic trust injustice in healthcare contexts can be done by orienting practices in healthcare towards the needs of oppressed groups within a background where wider steps are taken towards more social justice and integrated health goals.

Elena Popa is Ramón y Cajal fellow at the University of Seville working on a project conceptualizing causality in connection to social determinants of health funded by the Spanish Ministry of Science, Innovation, and Universities and the State Research Agency. Her research focuses on causality and causal reasoning and values in science, with special emphasis on cultural and social issues in medicine, particularly psychiatry and public health. Her published work includes articles in journals such as Synthese, Studies in History and Philosophy of Science: Part C, and Topoi and book chapters with publishers such as Oxford University Press and Cambridge University Press.

Genocide Denialism and the Epistemology of Ignorance

Last week, Melanie Altanian started a post in parts last week, on her new book, The Epistemic Injustice of Genocide Denialism (Routledge 2024), which is open access. Here she focuses on genocide denialism, prolonged trauma, and retraumatization.

Cover of the book by Melanie Altanian

Denialism, prolonged trauma, and re-traumatization

When confronted with the topic of Turkish genocide denial, the respondents of Kalayjian et al.’s (1996) study expressed a range of negative emotions, including resentment, hatred, and anger/rage, which are appropriate responses to “a perception that the moral order has been violated, with no recompense having followed this disruption” (Miller and Miller 1987, 198). Denial also presents an insult to painful memories, thus constituting a further humiliation that is likely to re-traumatize survivors and force them to silence themselves regarding their experiences.

Survivors may also wilfully suppress their memories, as it would bring back all the pain and terror of their experiences. This may go along with constrictive behaviour in an attempt to create some sense of safety and to control their pervasive fear. However, by avoiding situations that remind them of the past trauma, or initiatives that involve future planning and risks, they “deprive themselves of those new opportunities for successful coping that might mitigate the effect of the traumatic experience” (Herman 2015 [1992], 59). This includes isolating themselves or remaining silent about their traumatic experience.

Importantly, survivors’ feelings of fear, distrust, and isolation are compounded when they are in an environment of incomprehension or hostility towards them and their testimonies. This creates a vicious cycle, as the shattered self “can be rebuilt only as it was built initially, in connection with others” (Herman 2015 [1992], 74). Rendering traumatic experiences intelligible to oneself and relevant others are essential steps towards resolution and closure.

These considerations have cross-generational significance. As a descendant of Armenian genocide survivors who escaped to France, Janine Altounian (1999, 339) describes from a psychoanalytic perspective the “two-fold collective trauma” that is transmitted to descendants and which they must deal with:

[F]irst, the extermination of the descendants’ families and the annihilation of their ancestors’ native land and cultural referents; and second, the dispersion of their parents, escapees stripped of their territorial and linguistic roots and of any narcissistic foundation for their psychic survival, throughout the Western world, in countries where the denials and silences of Realpolitik hold sway.

Altounian draws on her own experience receiving and processing this transmission. The task, she says, requires being “equipped with the psychic and linguistic apparatus necessary” (Altounian 2017, 70). Borrowing from the language of the host culture, the testimony of the descendant thus may benefit from an institutional context that lends authority to that language; “the privilege of his current status […] allows him to live in a time and under political conditions that tolerate his testimony” (73). This marks the role of the descendant as a witness-translator.

We can, then, see how an institutional context of genocide denialism inhibits practices required for successful trauma recovery, thus prolonging trauma across generations, encouraging ongoing constrictive behaviour, and entrenching a range of negative affects. 

As I argue in the book, genocide denialism presents an epistemology of ignorance that weaponizes genocide survivors and their descendants’ dependency on available shared concepts, meanings, and other epistemic resources they can authoritatively draw on to render their testimonies tolerated, credible, intelligible, and thereby effective. The aim is to terrorize them further and to sustain domination.

Melanie Altanian is assistant professor for epistemology and theory of science at the University of Freiburg. Her research focuses on issues in social and political epistemology, moral philosophy, and social philosophy.