Bringing racial bias into focus in ophthalmology case studies
(from the UW Medicine Huddle)
In 2020, a professor in the Department of Ophthalmology presented a case study about glaucoma. The details of the case seemed routine — the kind read in textbooks or taught in ophthalmology classrooms across the country. The case included the use of race as a diagnostic criterion when describing the patient, for example, a fifty-year-old Chinese woman.
Students listening to the presentation raised the question: Why was race — a social construct — a criterion for diagnosis? The professor was uncertain how to respond; race was commonly cited in case studies.
The students’ questions led the Department on a multi-year reflection and subsequent redirection of the use of race in case studies.
Asking the right questions
At the time, the ophthalmology students took their concerns to Edwin Lindo, JD, associate dean, Social and Health Justice in the Office of Healthcare Equity.
He recalls conversations with the students. “I counseled them to dig into the research influencing the case study,” says Lindo. “When we ask critical questions of science, we get better science.”
The students discovered that the research informing the case study was attributed to two British ophthalmologists who studied populations in Mongolia and Singapore and extrapolated that Chinese women over forty have the highest rates of closed angle glaucoma.
“They didn’t study women in China,” says Lindo. “How did they draw that conclusion?”
Lindo notes another concern that students expressed about the case studies: The studies pathologized races not in the racial majority. For example, “Black race” was listed as a leading risk factor for glaucoma, while “white race” was not listed in describing age-related macular degeneration. This omission not only centered whiteness as the default race but also reinforced a false equivalence of race and genetics.
A department’s evolution
A year after the students first questioned the case studies, the Department of Ophthalmology organized a faculty retreat and the department’s Equity, Diversity and Inclusion (EDI) committee suggested inviting the students.
A member of the EDI committee, Michelle Cabrera, MD, professor of Ophthalmology, reflects on the retreat: “The students taught us. It was quite impactful. It not only made people think differently, it led us to carry the conversation into our spheres of influence in the world of ophthalmology.”
In Cabrera’s case, she co-authored an article about glaucoma and race in an effort to challenge assumptions.
“Racial categories represent mixed and variable ethnic origins,” writes Cabrera. “Although ancestry or genetics may play a role in biologic determinants of disease, the associations of race and disease have been shown to derive primarily from social factors, such as racism and social determinants of health.”
Cabrera reflects on how she and many of her peers had to rethink their medical education foundations.
“Race was emphasized in our education; it’s always been taught as if it were a predetermining factor of disease,” she says. “We’ve had to unlearn.”
Engaging the Office of Healthcare Equity
In 2022, Karine Duarte Bojikian, MD, PhD, assistant professor, was appointed to lead of the department’s Equity, Diversity and Inclusion committee and contacted the Office of Healthcare Equity to set up trainings for the ophthalmology faculty. Lindo taught the History of Race and Racism in Science and Medicine, which explores how medicine and science have been used to further racism, how racial categories and hierarchy are still used in modern medicine today and why race is not biological or genetic.
“To be clear,” says Lindo, “I’m not saying race isn’t a real thing. Just that we should not be using it as a biological marker and indicator.”
Lindo, to emphasize this point, shares other examples beyond glaucoma: Why was there a racial variable in the equation to measure kidney function? What does one’s race have to do with whether they should have a C-section? Why do some still use a race-based equation for the spirometer?
Bojikian said the attendees of Lindo’s training were particularly influenced by a sickle cell anemia example. Sickle cell anemia has a racialized association as a disease afflicting Black people. Yet, the disease is a genetic mutation that exists where there is a high prevalence of malaria, from sub-Saharan Africa to Southern India. In both places, there are people who have high rates of sickle cell.
“With that example,” says Bojikian, “we understood how often race is improperly used as a surrogate for genetics.”
The impact
The students, who have since graduated, went on to publish a paper in “The Journal of Academic Medicine,” in which they made the following recommendations to address the impact of using race in medicine:
- Emphasize the need for incoming students to be familiar with how the use of race in case studies can influence health outcomes.
- Provide opportunities to hold open conversations about race in medicine among medical school faculty, students and staff.
- Craft and implement protocols that address and correct the inappropriate use of race in medical school classes and course materials.
- Encourage a large cultural shift within the field of medicine.
Cabrera and Bojikian reflect on the impact of the multi-year discussion, which began in discomfort. Now, in addition to removing race from case studies, multiple faculty members have authored articles about the use of race in ophthalmology cases.
“We’ve made tremendous progress on this humbling journey,” says Cabrera. “I am grateful for the impact of activism within the School of Medicine. It and the Office of Healthcare Equity are making a difference.”
Bojikian agrees.
“We’d been taught things a certain way,” says Bojikian, “and sometimes change takes time and sometimes change takes a shock. The students challenging the case study was a shock, but it put us on this path, and we’ve come so far as a department.”