Addressing Epistemic Injustice from the Perspectives of Health Law and Bioethics

In this post, Lisa Bortolotti reports from a symposium organised by Mark Flear to explore interdisciplinary perspectives (law, philosophy of psychiatry, bioethics, sociology, and more) on epistemic injustice. The event was hosted by City University on 15th September 2023. The report covers two sessions of the event. The third session featured talks by Anna Drożdżowicz (on epistemic injustice and linguistic exclusion); Miranda Mourby (on reasonable expectations of privacy in healthcare); and Neil Maddox and Mark Flear (on epistemic injustice and separated human biomaterials). 

The City Law School, venue of the symposium

David Archard (Queen’s University, Belfast) talked about lived experience and testimonial injustice. Lived experience is being increasingly used in debates on a number of controversial areas—as a source of special authority on a given subject. The appeal to lived experience often works in resisting claims that contradict lived experience. Is refusal to listen to lived experience a form of testimonial injustice? For Fricker, testimonial injustice when the speaker receives less credibility than they deserve. The credibility deficit is due to an identity prejudice in the hearer. Testimonial injustice can manifest in different forms (disbelief, ignoring, rejecting). Are statements of lived experience reliable? How do we establish that? What if the people with lived experience are deluded or mistaken about what has been experienced? Lived experience can be source of advice (consultative) or authority (authoritative). Reasons to consult are not necessarily reasons to consider lived experience authoritative. Also, there is an important difference between what lived experience is and what can be inferred from lived experience. Injustice is in not listening and not giving weight.

The second talk by Lisa Bortolotti focused on research with Kathleen Murphy-Hollies (both at the University of Birmingham) on curiosity as an antidote to epistemic injustice. Lisa and Kathleen talked about the complex history of curiosity in the philosophical literature from a sin to a virtue, and argued that curiosity can be both an epistemic virtue when people disposed to attain knowledge have some basic skills for pursuing curiosity, use their judgement, are well motivated, and find pleasure in the pursuit of curiosity. Lisa and Kathleen also suggested that curiosity can be a moral virtue when directed at other people as it can support enhanced mutual understanding. To argue their case, they discussed cases in which people’s experiences are contested and people’s views are marginalised and pathologized. In those cases, an interpreter being curious helps them better understand the speaker’s perspective. 

The third speaker was Jonathan Montgomery (University College London) discussed public reason and religious voices in judicial reasoning. Jonathan focused on cases where courts and parents disagree on whether life support should be stopped for children. Often parents are motivated by religious views in arguing that life support should continue. Other cases are where a medical treatment or intervention is not wanted by the family due to religious convictions (e.g., refusing a blood transfusion that may be life saving). Are the courts dismissive of parents’ perspectives? Is there a shared reality that is misunderstood by one party and not the other? How are credibility markers distributed? Jonathan reviewed a number of interesting and controversial cases where there are several epistemic issues at play, including risk assessment and disability discrimination. How to address these problems? One suggestion is to avoid the court and try mediation first, on the assumption that less epistemic injustice occurs in a mediation effort. Another suggestion is to think clearly about epistemic authority: is it medical competence or lived experience? Whose voice is going to be powerful in the given context? The presentation finished with a super interesting table detailing different ways of thinking about events as instances of epistemic injustice.

Next, Priscilla Alderson (University College London) focused on epistemic injustice in the context of children having major surgery. She reviewed how we moved from children themselves and parents too from being removed from care to important questions being raised about the role of parents and children in making healthcare decisions. Priscilla’s research with patients and surgeons suggests that it is key to obtain consent from children for surgery, even very young children. They can be explained what is happening to them—we can inform and involve them in the procedures and the reasons for them. A famous case of conjoined twins was examined in some detail: a Senegalese father was pressurised into agreeing to surgery to separate his daughters after being told that one of them would not survive due to her weaker heart. In the BBC programme on this case there was a clear emphasis on medical expertise and undermining the parent’s view and there was absolutely no reference to what the twins thought or wanted. Even the ethics committee’s intervention was not helpful as it did not include the concern about how the surviving child would have felt after surgery, realising that she was alive because of her sister’s sacrifice. Priscilla talked about the need for a more engaged and embodied bioethics.

Magda Furgalska (York Law School) contextualised epistemic injustice within mental health law research. In Magda’s research with people who experience credibility deficits in legal context, she found that many participants were surprised that she did not require to see medical records or other evidence to corroborate what they were saying. And also, when she presented her work at conferences, audiences often questioned whether research participants did tell her the truth. This emerges clearly in the context of issues about insight. Mental health patients are often experiencing a catch-22. For patients, it is not just a question of recognising that they are ill but to comply with the clinicians’ view of their condition. So, if patients realise that they are ill and they should be going to hospital, then for the clinician they are not seriously ill and they shouldn’t be hospitalised. If they do not realise that they are ill and they don’t think they should go to hospital, then for the clinician they are seriously ill, and they should be hospitalised—and their report is not to be relied on anyway. Insight and capacity are often used interchangeably, and compliance is used to determine both insight and capacity. Deciding whether someone has capacity on the basis of whether they have insight, is a clear misapplication of the law, and also a case of silencing and testimonial harm as capacity is denied pre-emptively without being tested.

Magdalena Eitenberger (University of Vienna) discussed epistemic injustice in the area of chronic illness. Magdalena introduced the concept of “patho-curative epistemic injustice” to apply to diabetes and hepatitis C. This concept is drawn from the concept of patho-centric epistemic injustice developed by Havi Carel and Ian Kidd. The idea is that some people experience a credibility deficit due to their illness and hard facts are prioritised over lived experience reports. The new concept is supposed to concentrate on “curedness” and how in some cases of chronic illness an understanding in terms of being cured or fixed is not available. Biomedical models offer a reduced and simplistic conception of disease and health where problem-fixing is central. But more holistic therapeutic solutions are ignored. This also results in patients not being able to talk about their experiences over and beyond the idea that a person’s body can be either fixed or damaged. What “cured” means is not how the person feels (whether they feel healthy) but what their glucose levels are. Lived experience is not considered relevant and this impacts healthcare policy and welfare too. The role of the person as someone who manages their health trajectory is also undermined if the person is given the (technological) resources to monitor their health.

Next, Swati Gola (University of Exeter) addressed epistemic injustice in the India’s traditional healthcare system. Indian system of medicine is very heterogeneous system, some indigenous and some introduced from abroad. There are a lot of folk traditions at the margins (such as healers) which have been sidelined as unscientific after the British occupation. How should we understand indigenous health traditions in the light of colonialism? Is there any epistemic injustice against those traditions? Swati analysed the current situation in India, suggesting that knowledge colonialism is still a big problem, due to the dominance of the biomedical models and the power of the medical professions as seen through the lens of Western medicine. A case was made for epistemic justice to be essential to the decolonisation of knowledge and the decolonisation of the self via issues of hermeneutical injustice.