Confronting the Legacy of Medical Misinformation - Let's Start With Race-Based Medicine

By Keisha Bentley-Edwards, Ph.D., Olanrewaju Adisa, Kennedy Ruff, and Catherine Kiplagat
Samuel DuBois Cook Center Health Equity Working Group
Posted May 30, 2024

Throughout the COVID-19 pandemic, the health community was alerted to the proliferation of medical misinformation, particularly messages related to vaccines and treatment. For me, Dr. Bentley-Edwards, I became alerted to the dangers of medical misinformation in the early 1990’s from my father’s annual physical. My father’s new primary care provider (PCP) asked him what medication he was taking to control his hypertension. My father was confused. He wasn’t taking antihypertensive medication because his blood pressure was normal. However, his medical records revealed his blood pressure was well above the hypertension level cut-offs for several years. In past years, my father’s prior doctors had been telling him that his blood pressure was “high-normal” or that his levels were “normal for a Black man.” This misinformation allowed his blood pressure to be uncontrolled for an unnecessarily long time, heightening his risk for cardiovascular disease, stroke, and kidney disease. Upon learning all of this, my father’s new PCP, a young Black doctor, immediately prescribed him the appropriate medication, and he has taken care of his health since then.

Loud and Wrong

Hypertension is often called the “silent killer,” but in this case, my father’s physicians’ reliance on race-based medicine to guide diagnosis and care rang loud and wrong. Race-based medicine relies upon biological distinctions between racial groups that are integrated into practice, training, and health algorithms and represents a systemic form of medical misinformation. As such, medical misinformation cannot be reduced to error-filled social media campaigns. As researchers, providers, and other members of the health community, we must reflect on how we generate, share, and sustain medical misinformation so that we can bring it to an end. To be clear, race-based medicine is not to be confused with personalized care or precision medicine.

In the past, providers were taught to provide Black patients with a specific class of antihypertensive medication, narrowing their medication options early in their treatment course from those that may be more effective and reduce the risk for progression to chronic kidney disease.  These race-based assumptions do not exist in a vacuum. They inform the development of critical assessments and risk predictors. This history calls into question the goal of algorithms to save time, money, or lives. If the goal of an algorithm is to save lives and reduce health disparities, an over-reliance on race-based medicine can get in the way of its success.

Important Steps

Prior to 2021, kidney function was determined by a calculation that considered multiple biological indicators and included a coefficient accounting for patient race. The use of this formula systematically overestimated kidney function for Black patients, reduced the chances of patients meeting the threshold for end-stage kidney disease, and increased the wait times for Black patients to get on the transplant list or receive other appropriate care such as dialysis. However, the National Kidney Foundation and the American Society of Nephrology revised the eGFR recommendations to exclude Black race as a biological factor. In 2023, researchers  estimated that roughly 70,000 Black adults could move higher up in the matching system and decrease their wait time for a kidney transplant as a result of the improved algorithm. As evidenced by the pre-2021 eGFR recommendations and the lack of evidence supporting race-based antihypertensive treatment, race-based medicine is not the solution. The Organ Procurement and Transplantation Network took an important step to push policy that has helped nearly 2,500 Black patients receive a kidney who would not have if the old algorithm were still in use. More needs to be done to improve the health of Black Americans.

Race vs. Genetic Ancestry

Eliminating confusion by understanding race versus genetic ancestry is fundamental to addressing and redressing health inequities. Although structural racism is the most undeniable factor of disparate outcomes for Black patients with hypertension and kidney disease, ancestral genetic variation can partially explain differential experiences with kidney disease.  APOL1 is a genetic marker present in all people; however, certain Black Americans (up to 10-15%) inherited a genetic high-risk allele combination (G1 and G2) that has evolved over 10,000 years beyond the original function in protection against African sleeping sickness (trypanosomiasis). This combination correlates with an increased risk of kidney diseases like kidney failure. Similar to sickle cell disease, there is an increased incidence of these alleles where the disease is prevalent (e.g., West Africa).  APOL1-mediated kidney disease (AMKD) may accelerate the progression to kidney failure, but it is not the single cause of progression. Even with the help of ancestry studies, physicians must resist jumping to conclusions about how to use these findings to serve their patients.

Thoughtful Engagement

Studies about AMKD hold promise for personalized and genetically informed care for millions of Americans in the wake of precision medicine. Up against an extensive history of medical untrustworthiness by the U.S. health care and research systems, my team and I have argued that we must thoughtfully engage and include communities impacted by health disparities throughout the research enterprise.

Discussions of structural racism and medical misinformation do not diminish the relevance of personal agency and health behaviors. Yet, our personal agency is informed by the options that are available to us. When our choices are clouded by misinformation, so is our personal agency. Although I can’t decisively say that my father’s eventual progression to chronic kidney disease was the result of medical racism and structural racism, I can confidently say that it was contributing factor.

In the Health Equity Working Group for the Samuel DuBois Cook Center on Social Equity at Duke University, we study the causes and consequences of racism and sociocultural indicators on health outcomes. Does race matter in understanding health disparities? Yes, but we argue that when you recognize race as a social construct, you realize that social conditions should be an integral area of study for resolving racial health disparities. In our NIMHD-funded project, we examined Black people’s religiosity for its effect on cardiovascular disease risk factors, including hypertension. Our findings showed that Black religious and cultural experiences in America are diverse and important in understanding cardiovascular disease risks. Additionally, we are members of the recently formed ERASE-KD consortium (Eliminating Racism And Structural inEquities in Kidney Disease) dedicated to mitigating structural racism’s impact on kidney disease.

We, as members of the health community, must have the humility to recognize that we are not immune to the allure of medical misinformation, even when it is rooted in systemic racism. How this form of racism is reproduced and disseminated as medical misinformation is neither isolated nor benign.

Keisha Bentley-Edwards, Ph.D., is an associate professor of medicine, Co-Director of the Center for Equity in Research, and associate director of research for the Samuel DuBois Cook Center (Cook Center) on Social Equity at Duke University.

Olanrewaju Adisa is a medical student at Duke University.

Kennedy Ruff is an associate in research at the Cook Center and graduate student at North Carolina State University’s Clinical Mental Health Counseling Program.

Catherine Kiplagat is a 2nd year undergraduate student at Duke University.

Dr. Bentley-Edwards leads the Cook Center’s Health Equity Working Group, and Adisa, Ruff, and Kiplagat are all members.