Addressing racism in medicine requires tackling the broader problem of epistemic injustice

Research into epistemic injustice, the practice of discrediting people as knowers based on their social identity (Fricker 2007), has gained broad popularity in ethics. Racism in medicine often manifests as not taking the testimonial and conceptual assertions of Blacks and other patients of color seriously, and developing systems of care, resource allocations, and research agendas based on this silencing. Applying the concept of epistemic injustice to bioethics would not only operationalize the effects of racism in medicine using a novel, theoretically rich framework, but would nest it in a broader web of bioethical concerns: patients suffering from addiction and mental illness are routinely epistemically discredited due to stigma, which degrades their care, and patients of color at the intersection of these conditions fare even worse. Striving for epistemic justice lies at the heart of correcting these interconnected problems.

In discussing racism in medicine, the target articles in this issue of AJOB lead us down this path. Braddock (2021) concludes we should place a rectificatory weight on the scales used to decide who will receive rationed interventions when the underlying complications that disadvantage a patient’s chances are the result of systemic racism. Mithani, Cooper, and Boyd (2021) argue that bioethics needs to shed its apparent amnesia about race. They call for an activist bioethics posture that actively speaks out against injustice and embraces counter narratives. Yearby (2021) observes that research into racial health disparities using whites as a control group perpetuates arbitrary normative hierarchies.

Each of these authors, in their own way, reject colorblind methods of bioethics in the pursuit of justice. This makes them kindred spirits with philosopher Charles Mills, one of the foremost critics of contemporary political philosophy. Mills observes that Western theories of justice deliberately limit themselves to ideal theory: from John Rawls and his intellectual descendants to thinkers in parallel traditions, they offer aspirational accounts of justice and its institutions rather than guidance for our markedly unjust circumstances. They place the practical problems of racism beneath the scope of their intended project. The omission can be glaring: Mills points out that Nozick’s theory of the just transfer of property makes a prima facie case for slavery reparations, but nothing like it is discussed in the literature, which is primarily the product of comfortably-situated white philosophers (Mills 2005, 180). To overcome this silence, Mills advocates adopting the feminist tradition of nonideal ethical theorizing as a guide to acting in the moment (Mills 2005, 165–166).

Bioethicists would be well served by following in Mills’ footsteps. One way would be to engage with the problem of epistemic injustice in medicine. The feminist philosopher Miranda Fricker (2007) describes how our cognitive biases against certain groups of people as knowers produces two categories of injustice:

• Testimonial injustice, or refusing to properly acknowledge the assertions and beliefs of a person because of irrelevant features of their social identity or condition, and

• Hermeneutical injustice, which occurs when “a society lacks the interpretive resources to make sense of important features of a speaker’s experience, because she or members of her social group have been prejudicially marginalized in meaning-making activities” (Anderson 2012, 166)

Many of the paradigm cases concern women, who have endured centuries of seeing their knowledge ignored or discredited because of their gender. For example, women were denied the concept of sexual harassment by being told it was a misunderstanding of the transactions they felt victimized by, which were the benign acts of their alleged harassers. When the concept was finally acknowledged, the women who alleged it were often told they should not be believed, or they were using their allegations to draw attention away from poor work performance or personality problems. The seminal article about epistemic injustice in healthcare by Carel and Kidd (2014) begins with a doctor nonchalantly discounting the complaints of pain of a woman who has just given birth as he stitches up a tear in her vagina. Sometimes these injustices are intentional, but, like racism, they often emanate unconsciously from the basic structure of the cultures and systems they take place in.

Given these definitions and examples, we can see how epistemic injustice helps characterize certain instances of racism in medicine. It may explain why physicians systematically discount complaints of pain and discomfort by Black patients, and do less to treat them (Meghani, Byun, and Gallagher 2012). There is evidence that physicians dismissed these complaints as drug-seeking behavior, ironically sparing some patients from the initial analgesic wave of the current opioid crisis (Frakt and Monkovic 2019). It also helps explain why medical professionals and institutions have for decades downplayed the urgency of combatting sickle cell disease in the Black community. Correcting this requires presuming that patients are accurately articulating something about themselves, and realizing that ethnocentric viewpoints can deprive us of critical evidence.

With its close relationship to stigma, the framework of epistemic injustice can not only be applied to racism in medicine, but extend to the realm of mental illness. People with dementia and schizophrenia are often believed to be incapable of offering reliable knowledge about their own conditions, which further diminishes their tenuous perceptions of self-efficacy. The prejudice that prevails against people with mental disorders can lead physicians to question a patient’s self-diagnosis and wonder why she can’t just “get a grip” (Crichton, Carel, and Kidd 2017, 68). To many, the idea of mental illness incorrectly implies a generalized cognitive deficiency in the people who suffer from it, yielding a strong cognitive bias against them.

There is almost no research about epistemic injustice against people who use drugs, but it has a profound negative effect on their healthcare. People with substance use disorders are routinely assumed to be dishonest by nature, with doctors questioning their motives for seeking opioid-based treatment medications. The DATA waiver system that regulates who can prescribe buprenorphine and the rules governing its use seem to presume the people who seek it are inherently deceptive in their motives. This testimonial injustice should come as no surprise given the stigma against people who use drugs, but it has led to a shortage of these lifesaving medicines despite evidence that most illegally diverted buprenorphine is consumed by people to treat their opioid addiction (del Pozo, Krasner, and George 2020). More broadly, it can be argued that these problems arise from a failure to acknowledge substance use as a legitimate way to experience certain pleasures in life (del Pozo and Beletsky 2020), which could be characterized as a hermeneutical injustice.

Epistemic injustices can compound each other, increasing the urgency to reduce them. Addiction and mental illness can be comorbidities, and racial minorities are routinely subject to social and economic disadvantages that erode mental health and increase susceptibility to substance use. It is hard to think of a person in a more precarious epistemic position than a Black patient suffering from both substance use disorder and mental illness. The biases of our healthcare systems and practitioners seem designed to discredit anything she might say, and we need to understand how this can deprive us of the knowledge we need to offer her effective care.

Mills maintained that despite its potential to guide inquiry, “logic radically underdetermines what actually gets thought about, researched and written up” in philosophy (Mills 2005, 180). We would argue the same is true in both bioethical and biomedical research. The remedy is not to put all testimony on par with carefully cultivated scientific evidence, or to pursue research in countless directions based on every type of assertion. But that is different than failing to take seriously the knowledge that both patients and underrepresented practitioners can offer a research agenda. For example, if we believed the testimony of many patients, low-barrier access to addiction medication would already be a well-researched and implemented response to the opioid crisis. Worrying that epistemic injustice is both personal and systemic in practice, Elizabeth Anderson (2012) argues that we can make progress towards justice by making epistemic inclusion a sought-after and rewarded virtue of institutions as well as individuals, presumably including the institutions that deliver healthcare and create the knowledge that advances its practice.

Making this a priority in bioethics will empower the discipline to proactively pursue better health outcomes for the systematically disadvantaged through a properly inclusive epistemology. It will require training practitioners to be acutely aware of the ways in which they might ignore or discredit the testimony of people in compromised social positions, and to recognize that ethnocentric and exclusive institutional structures lack the epistemic diversity necessary for engaging in the most productive research. Discounting or silencing the testimony of marginalized patients not only limits their quality of care, but obscures evidence that can help inform entire avenues of research by perpetuating a skew towards habit and privilege. A bioethics advocacy for “evidence-based research and practice” only seems like an awkward truism if the evidence we accept at present is all we need to consider. Many Black Americans, people who use drugs, people with mental illness, and other people in vulnerable and compromised social positions would disagree.