Epistemic Injustice and Sickle Cell Disease

This ethics session is part of a multidisciplinary session on sickle cell disease. For the ethics portion, begin by listening to this podcast:


It is a short podcast but addresses some of the issues of racism and injustice in the clinical context that concern us here. The podcast focuses on Dr. Judd’s poem “In 2006 I Had an Ordeal with Medicine”, which comes from her collection patient. This poem, and the collection overall, articulates her own unjust experience with medicine and helps us to see and feel its connection to a history of like experiences of injustice. We can only summarize here and you can find a bit more on the podcast linked to above, but Judd experienced prolonged suffering with multiple providers as her ovarian torsion was continuously misdiagnosed (as menstrual cramps, as pregnancy, as a bladder infection). She was continuously not believed, not heard, and not treated appropriately, and so disrespected and dehumanized, all the while experiencing significant pain.  This poem (and the collection more fully) interweaves this experience with the advent of gynecology in which enslaved African-American women were experimented on by Dr. Marion Sims (the so-called “father of modern gynecology”). At least three of the women Dr. Sims’ experimented on (Anarcha Wescott, Betsey Harris and Lucy Zimmerman) went through multiple procedures without anesthesia despite it recently being available. We highly recommend (though it is not required) an article in the New York Times, which reveals some of the historic details of these experiments and the forms of torture experienced by the women under Dr. Sims’ supposed care (including the fact that “Sims’ records show that he operated on Anarcha 30 times”).

While we might hope that the experiences of Anarcha, Betsey, and Lucy among so many other African-Americans were not so deeply tied to the experiences of persons of color in contemporary society, Dr. Judd’s experience and work, and this session on sickle cell prove otherwise. We will discuss how palpable and dangerous continued racial bias can be. This bias manifests in health disparities in the multifold ways, only some of which will we be able to address in this session. Black and brown children, teenagers and adults continue to face health disparities even when other social factors are controlled for (e.g. education and income). As Judd says, these ghosts haunt. And it is for this reason among others that we ought remember, honor, understand, and discuss.

Now let’s do some ethics! After listening to the podcast, read this snippet from Miranda Fricker’s Epistemic Injustice (click here)…

Epistemic injustice takes a number of forms.

One example in the healthcare setting is skepticism regarding the testimony of a patient (e.g. because they are overweight or because they use drugs). This can happen in the other direction as well, a healthcare provider may face skepticism from a patient (e.g. because of their race or gender). These are forms of epistemic injustice because one person is unjustly treated as not knowing because of some form of bias.

A second form of epistemic injustice revolves around divulging information. In other words, providers might not give a patient certain information or the patient might not disclose information to providers if the other is not deemed (typically unconsciously) as deserving or capable of knowing. For instance, a provider might focus on telling an overweight patient to lose weight when they could/should also be discussing something like physical therapy (optional: for more on this read: http://www.ijfab.org/blog/2017/11/what-you-dont-know-can-hurt-you-epistemic-injustice-and-conceptually-impoverished-health-promotion/).

Fricker’s conceptualization of epistemic injustice offers one theoretical perspective that is helpful for articulating some of the injustice that occurs in the context of sickle cell disease. This terminology is helpful to both understand some of the injustice that occurs and, more importantly, find the best course of responding to that injustice.

Consider the application of the term epistemic injustice in the following case…

TA (at 20yo) is admitted to the ER for the fifth time this year. He complains of intense pain, which he attributes to an intensive finals week followed by celebrating with friends. He is started on a morphine PCA, which seems to temper the pain for a couple of days, but then on day 3 he requests an increase in his pain meds. He doesn’t think the allotted morphine is doing enough. However, his inpatient team is reluctant to increase the dose of IV morphine, which is already quite high. His current dose could be easily converted to an oral narcotic and managed in the outpatient setting. The inpatient team holds a care meeting with TA and explain their rationale for recommending discharge. They think he should go home on the oral narcotic, where he will be more comfortable and his pain will be more easily controlled through both medical and non-medical means. They council TA that it would be better for him to return home given the benefits of being at home. But TA says that he is not ready for discharge.

Using the Ethics Case Analysis Tool, respond the following questions about this case:

  1. Fill out the 4-Boxes just based on this small snippet (there isn’t a lot of information here, so there will not be a lot in each box, that’s ok).
  2. Name the interactions (or lack thereof) that might reflect a form of epistemic injustice. (e.g. the team may not have demonstrated concern for TA’s pain when he requested an increase in his pain med dosage). 
  3. Name one or more ethical principles or virtues that you think would be important to manifest in our response to TA. (e.g. empathy for TA’s experience of pain)

No matter what we can accomplish in this short session, it is not possible to do justice to the narratives we have considered here and the history we have glimpsed. We hope that the reading and reflecting on the podcast encourages us all to continue to delve deeply into the historical narratives and current lived experiences as you move forward with your education and practice.