Is Racial Bias in Diagnostic Testing Killing People?
Not everyone is getting the same out of healthcare. Some patients are endangered in America’s healthcare system. Racially biased diagnostic tests are misdiagnosing patients, inaccurately hiding the severity of their health issues. This lethal predicament affects some patients' chances to receive timely care and access to crucial resources which can cause their health conditions to worsen, even to the point of death. It is a haunting feeling of déjà vu: although we’ve ushered in a new year, not much has changed.
We come to a mindful pause to investigate why American healthcare poses such harm right now. From this angle we see an illumination of deadly cracks that led us here and continue to grow. In gathering our data, we identify three historical and systemic patterns that directly impact healthcare and health outcomes in Black Indigenous and People of Color (BIPOC) patients: racism, medical mistreatment, and clinical trials. This trifecta holds the power to perpetuate institutional inequities throughout our healthcare system. It also holds immense potential to rectify and even prevent them. Through this illumination, we hope to see these cracks, learn from them, and move with agility to prevent ourselves from falling into them.
American Healthcare Today
How is it that patients are dying after diagnostic tests indicate they are “okay,” especially with astounding breakthroughs in technology and precision medicine? Kristal Higgins has kidney failure yet she’s been waitlisted for 6 years hoping for a kidney transplant so that she may live a healthy life with her husband and daughter. Higgins’ friend, also waitlisted, died in 2020 because her kidneys gave up before she had a fighting chance to receive a transplant. She was a mother of five. BIPOC patients are not equitably receiving the benefits of diagnostic testing because hospitals across the country are using software programs powered by algorithms with racial bias that inadvertently hide the graveness of their health issues. In the case of Higgins’ friend, her misdiagnosis prolonged her waiting time and denied her access to timely care and resources that could have saved her life .
Now that we have today’s American healthcare in focus, we ask ourselves: “Why is this happening?”; “How did we get here?”; and, “What is the connection between racism, medical mistreatment, and clinical trials that cause disparities in diagnostic testing?” To unearth the answers to these questions, we must analyze the relationship that BIPOC has with the American healthcare system.
Rooted in Racism
As we begin our excavation, we see America’s place in the creation of systems that have deep deep roots in racism, going back to the colonization of Indigenous peoples of America and chattel slavery. The dynamic of these events birthed an obscenely inequitable relationship between humans in which the subjugated became objects of property. This process of dehumanization objectified people and their bodies. Following the abolition of slavery, in an effort to preserve the status quo of imperial colonization and the same power dynamics over BIPOC — especially Blacks — injustices have been strategically woven into the fabric of America. This legacy is a direct line from colonization and slavery and it's what we know as racism in America. It thrives today in which the insidious presence of racism and abuse of its power is exercised in healthcare. BIPOC have taken the abhorrent brunt of this and we can see this in the following manifestations.
A History of Medical Mistreatment
Objectified and at the whim of those in power, historical records show a long lineage of medical mistreatment towards BIPOC, which Blacks in particular have unceasingly suffered dating back to slavery.
Gynecological Experimentation on Black Slaves
In 1845 gynecological experimentations were performed on enslaved Black women by Dr.J.Marion Sims. Sims, an American gynecologist, operated on many enslaved women, including poor Irish women in New York to advance his career. He exploited the bodies of the enslaved first in which Lucy, Anarcha, and Betsey’s accounts have been well documented. The controversy points out that he conducted his surgeries without consent and horrifically, without anesthesia. Sims performed 30 unanesthetized surgeries on Anarcha alone. Sims contended Black people had a higher threshold for pain than whites. Lucy, Anarcha, and Betsey and the many other enslaved women not mentioned, continue to embody the ignored pain and suffering Black women experience in today’s healthcare system.
The Tuskegee Experiment
In 1932, the US Public Health Service studied untreated Syphilis in 600 Black men in Tuskegee, Alabama. These patients sought medical treatment for their symptoms but were never told they were infected with Syphilis and were denied penicillin so that doctors could examine the progression of the disease without their consent. The study progressed for 40 years. Due to the denial of treatment, many men infected their wives and children with the disease. 128 men died and the majority of the study incurred fatal health complications.
Eugenics
In the 1960-1970s, as part of a eugenics initiative, Black, and Native American, women were sterilized without their giving consent in attempts to minimize the propagation of these races. Latina women were highly targeted in prisons up to 1980. But make no mistake that incidents of forced sterilization have happened all the way up to now. We should all be aware of eugenics procedures so commonplace as to be simply referred to as a “Mississippi Appendectomy.” Healthcare professionals have coerced and manipulated these women, violating their bodies and taking their choice of motherhood away from them, some as young as 11 years old.
Diagnostics that Misdiagnose
Today in 2023, there exist diagnostic tests that result in worse health outcomes for patients. Furthermore, some physicians aren’t aware that each of these crucial tests use race as a modifier because the algorithms are already programmed into the software. Diagnostic testing is central to health outcomes. If diagnostics are not equitable, patients cannot access accurate test results that will inform critical decisions and next steps for general health needs or diseases. The prominent diagnostic tests are the:
Kidney Function Calculation
Lung Function Formula
Risk Assessment of Vaginal Birth After C-section (VBAC)
The kidney function calculation uses the eGFR (Estimated glomerular filtration rate) to assess kidney health. It was racially modified in 1999 and is inherently biased towards BIPOC. It assumes that Blacks have more muscle mass than non-Blacks and uses a race modifier to calculate a range that causes kidney function to appear healthier than it actually is.This is a grave situation for BIPOC as a large population of Blacks suffer from kidney disease and are delayed access to timely critical care such as life-saving kidney transplants.
The lung function formula uses spirometry to assess lung health. It too uses racial bias to diagnose BIPOC, believing that Blacks have a lower lung capacity. This antiquated and false notion stems from 19th century research and is still being used today. This is problematic for Blacks, as a low score on their spirometer is assessed as normal, resulting in further pulmonary issues and exacerbations of COVID-19 symptoms.
The risk assessment of vaginal birth after C-section (VBAC) scores Black and Hispanic women at a lower success rate for natural birth options after C-section, based on biased questions of race and socioeconomic status, opening them up to unnecessary surgeries and potential complications.
Today, medical mistreatment translates to a multitude of misdiagnoses as these racially biased diagnostic formulations fail to give healthcare professionals accurate baselines that rob patients of basic care and timely interventions to treat their diseases. Jennifer Tsai, an emergency medicine resident at Yale, speaks to this. She estimates what the health impact would have on Blacks with kidney disease after removing the race modifier from the eGFR calculation. The data revealed the following:
“3.3 million Black Americans would cross the threshold for diagnosis of chronic kidney disease stage three, 300,000 more would qualify for beneficial nephrologist referral, and 31,000 more would become eligible for transplant evaluation and waitlist inclusion”
Tsai states, “When you imagine 300,000 Black people across the United States possibly being able to access or not access a kidney transplant based on this antiquated race correction that most scholars agree is defunct and harmful, that puts into perspective how important it is to change”.
In this glimpse of American healthcare throughout the centuries up to this point, we see that so many people have suffered in the name of medical oppression and we cannot ignore it. The evident correlation between racism and medical mistreatment urges us to look now at the third component of the trifecta and examine its connection to the bigger picture.
The Power of Clinical Trials
We bring clinical trials to the center as they hold great power–to corrupt or transform the standard of healthcare for all people. Clinical research plays a crucial role in the factual principles by which medicine and its formulations are conceived, taught, practiced, and maintained. Clinical research not only governs knowledge, it’s responsible for creating it. With this understanding, the research data gathered from clinical trials sets the epistemological authority by which scientists, researchers, governing agencies, hospitals, and doctors abide by. Clinical trials cradle immense responsibility. They can either hurt the populations they serve or help them. We first look at the role and power clinical trials have had on perpetuating racial bias in diagnostic testing.
Dr. Jayne Morgan, cardiologist and president elect of the Southeastern Life Sciences Association is dedicated to health equity. She elaborates on the important role clinical trials have on dictating clinical research by which the standards of healthcare are established. She explains two distinct considerations that must be addressed.
On one hand race is being used problematically as diagnostic tests are not accurately rooted in clinical data about the human body, they are rooted in racial bias about the “Black body” or “Brown body”, keeping BIPOC in silos.
On the other hand, there is a demonstrated lack of inclusion of BIPOC in clinical trials, inhibiting diversity in clinical research, which harms everyone.
Recall the eGFR test used to calculate kidney health. We see evidence that the eGFR clinical trial lacked inclusion of BIPOC and gathered data from mostly white participants, and that more research is needed to ensure accuracy and efficacy.
We see in clinical studies of the VBAC that race based calculations come from a lineage of slavery and use race, ethnicity, and socioeconomic factors to score BIPOC women lower than white women.
Dr. Morgan also points out that pulse oximeters and thermometers react differently on patients with more melanin in their skin and because BIPOC were excluded from these clinical trials and the testing of these diagnostic tools, the overall development and accuracy of the equipment is flawed to this day. Dr. Morgan says,
“Although we recognize that individual proportions may be different, things can also be related to occupational and social determinants of health and all proportions are not certainly race based, and so if those calculations are going to be done, they need to be done on an individual basis and not using race as a proxy in these formulations and in the software.”
Dr. Gary Puckrein from the National Minority Quality Forum amplifies Dr. Jayne Morgan’s notion that eradicating biases and improving diversity in clinical trials through individual testing is truly a key piece. Dr. Puckrein states,
“What we’re finding is that we need highly targeted medicine, each individual is different. It has nothing to do with race or anything like that – it’s that everybody’s biology is different.”
Furthermore, this article states
“It is critical that REMGs (racial and ethnic minority groups) are included in clinical trials because, as the broader population, their data will affect the outcome of precision medicine for everyone...We need broader genomic data for understanding and curing existing diseases. Collective action is needed so future generations avoid the same health disparities.”
Clinical trials have an obligation to make sure that participants represent the populations who will benefit from its innovations in precision medicine. Clinical trials have the ability to correct both of these issues. First, by not using historical racial biases in clinical trials as a determinant to alter patients’ true baselines. Second, by being inclusive of BIPOC in clinical trials to test everyone on an individual basis which is not racially limited. Both considerations have the potential to provide a complete genomic picture we need for accurate diagnostics for everyone.
Dr. Puckrein also acknowledges the inherent mistrust BIPOC feel towards clinical trials because of its racist and traumatic effects. A huge part of healing this historical trauma is to first acknowledge it and talk about it, only then can these wrongs be rectified. As we see here, clinical trials have had an inequitable legacy. There is much work ahead to address racism, medical mistreatment, and clinical trials. How can the damage of systemic racism be repaired at the highest level within healthcare – the institutional level? We take a look now at movements in action that are changing outcomes from the top down.
The Potential of Institutional Coalitions
Medical Universities
The Yale School of Medicine shares with us an impactful article about a coalition from Yale New Haven Health System (YNHHS) that is cracking healthcare wide open as they dismantle barriers from within. We highlight their efforts towards making diagnostic testing equitable.
After years of gradual discussion and debate around its ethics, the YNHHS made a collective decision to question the eGFR race calculation that assesses their patients’ kidney health. Dr. Louis Hart, assistant professor of pediatrics at Yale school of medicine and medical director in the Office of Health Equity at YNHHS explains the consequences of the crude estimate that urged him and others to stop using it. Dr. Hart says,
“This equation increases our estimate of Black patients’ kidney function by 21% relative to non-Black patients, regardless of other factors,” says Hart. “We use an equation that artificially makes their kidneys look healthier and thus might delay their qualification for public health insurance for dialysis, or referral to a nephrologist, or to become eligible to list for organ transplantation.” Hart says it is sickening to see the impact of this racialized equation and how it denies access to the very same patients who are most likely to need comprehensive kidney care.”
With this knowledge, medical students began to eradicate the use of the eGFR calculation from their practice entirely. This movement was inspired by Naomi Nkinsi, a Department of Global Health MPH student from the Washington School of Medicine. Nkinsi fought to eliminate the race modifier from her own medical institution in 2020 and students from Yale were inspired and activated to follow her lead.
Medical Foundations
Jessica Cardena, PhD and MD candidate and Jennifer Tsai, MD,MEd from Yale, published a paper in the Lancet drawing attention to race-conscious medicine. The outcry they and others were making was echoed and heard because two months prior, the National Kidney Foundation (NKF) and American Society of Nephrology (ASN) formed a joint task force of their own to reassess the race modifier. These and similar efforts resulted in the development of a new equation that doesn’t use race, and is published the New England Journal of Medicine. This new equation is undergoing corrections. There is a lot more work to be done on this front, but the process is starting and pushing for health equity.
Concurrently, the Organ Procurement and Transplantation Network (OPTN) is making a significant shift to approve waiting time adjustments for candidates of kidney transplants who were affected by the race modifier. This has immense potential to save the lives of many patients who before had no hope to receive a transplant.
Government Agencies
To reinforce this alignment, the FDA made a fundamental institutional shift in requiring that clinical research companies submit a plan for ensuring diversity among their trial participants. This is instrumental because the FDA as a regulatory entity sets the bar on a federal level in which protocols must be checked and balanced to be inclusive of BIPOC.
Through these coalition efforts, pivotal change is happening on an institutional level which is where new roots must grow. To unroot racism, new seeds of equity are being planted by medical universities where knowledge is taught, by medical foundations who continue to corroborate research, and by government agencies that are regulating it. These coalitions have birthed a new trifecta which have the power to prevent medical injustices caused by racism, medical mistreatment and clinical trials. Most importantly there is acknowledgement of a past that is rooted in racism, which brings attention the effects it has on healthcare in this country, today. We have a very long way to go, but these institutions are taking collective action in order to undo centuries of health inequities. In so doing, they are working to provide equitable healthcare as it should be for the greater good.
We can see the cracks that led us here. We can shine light on what’s at stake for all of us if American healthcare and the powers that dictate it do not change. Fortunately, we can illuminate the potential that institutions have to transform intrinsically to improve healthcare. We carry this light as a torch so that others can see that equity can result in the best health outcomes for everyone. We take with us Dr. Hart’s words,
“We need to acknowledge medicine’s sobering past of racially separate and unequal care in our country with honesty, humility, and the determination to say that we can and must do and be better in the future.“
Call to Action
DHH is expanding and amplifying research on inequities in diagnostic testing. We believe this topic impacts EVERYONE, as tests are the baseline for care and treatment of any health issue or disease. Stay tuned to learn with us, as we continue to report on what you need to know to advocate for yourself and others. Subscribe for the latest.
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