The Origins of Medical Mistrust in the U.S.
Key takeaways:
Medical mistrust in the U.S. is rooted in numerous past and current events. These events have shaped Americans’ views of the healthcare system.
The Tuskegee Study allowed enrolled participants, all of whom were African American males, to be left untreated for syphilis for decades.
The medical community still struggles to gain the trust of many populations when it comes to medication education, healthcare delivery, and research.
This is a two-part series examining medical mistrust in the U.S. and how the medical community can work to overcome it.
Medical mistrust in the U.S. stems from long-held practices and now widely publicized events that have shaken communities throughout our history. Although the U.S. was founded on the principles of freedom and equal rights for everyone, it has not always delivered that promise for everyone living within its borders.
The transatlantic slave trade, the Trail of Tears, and the practice of eugenics are just a few examples that illustrate the origins of medical mistrust. Groups that have historically been marginalized, taken advantage of, and wronged in the U.S. are more likely to mistrust medical and public health authorities. This mistrust is deeply rooted and will take time and effort to address.
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Here, we’ll explore past events that have bred mistrust of the medical community, and also look at ongoing challenges the medical community must face in order to restore trust.
Historical events that have shaped mistrust
Medical mistrust has emerged in various marginalized groups, often because of unfair or abusive treatment by the healthcare system.
Black, Hispanic, Asian, Native American, women, disabled, and LGBTQ people have all been vulnerable to medical mistreatment. Instances of unethical research and teaching practices, involuntary medical procedures, refusal of care, prohibition of culturally based practices, and biased medical treatment have occurred throughout modern medical history. These experiences continue to affect patients’ sense of safety when receiving care.
Below, we’ll look at some past and more recent abuses in the healthcare of marginalized communities.
Grave robbing
In the late 18th and early 19th centuries, demand for corpses for anatomical dissection in medical schools exceeded supply. In response, grave robbing became more common.
While grave theft was illegal, certain populations, such as slaves, immigrants, and the poor, were vulnerable to these crimes, which continued into the early 1900s. Medical schools even funded this practice by hiring professional grave robbers, known as resurrectionists, to supply them with bodies.
Forced sterilization
Sterilization practices gained popularity in the early 20th century but continued into the 1970s. They were grounded in the eugenics movement, which was based on creating the “better human.” It targeted anyone deemed unfit to reproduce, including immigrants, Black people, Native Americans, poor whites, and those living with disabilities.
Initially, the practice targeted white men, but over time women and people of color were increasingly targeted. Backlash to desegregation led to Black people being increasingly sterilized, and data from North Carolina indicate that by 1960, more than three times the number of Black women were sterilized compared to white women.
While like this might sound like a bygone practice, California prisons performed unwanted sterilization on female inmates up until 2010.
Maternal death risk
Since maternal death rates were first reported in 1933, Black women have been found to have higher maternal death rates than white women. More recent reports show that the difference in maternal death rates between white and Black women is higher than previously reported. In fact, the most recent study reports that Black women were more than three times as likely to suffer pregnancy-related deaths than white women.
Inequality in access to healthcare, education, and physical environments have been cited as possible factors in the differences in maternal death rates.
The Tuskegee study
The now infamous Tuskegee study, officially called at its start in 1932 the “Tuskegee Study of Untreated Syphilis in the Negro Male,” is now nearly synonmous with unethical medical research. It enrolled 600 Black men, 399 of which had syphilis.
At the time, there was no treatment for syphilis. But by 1943 penicillin became the treatment of choice. However, the men in this study were never offered penicillin and allowed to go untreated for decades, until a news report in 1972 forced the federal government to take action.
In total, 28 men in the study died from syphilis, 100 died from related complications, 40 spouses contracted the illness from study participants, and the illness was passed on to at least 19 children.
According to the ad hoc committee evaluating this trial in 1973, no protocol documents the intent of the study and no informed consent was provided. Some of the men in the untreated group were offered treatment, but it was from non-study physicians and used arsenic injections and antibiotics “not considered curative for syphilis.”
The ad hoc committee, however, even offered a statement indicative of the prejudices against the Black community when it seemed to place blame on societal standards rather than the researchers’ actions: “In retrospect, the [Tuskegee study] was ethically unjustified in 1932. This judgment…is made with the advantage of hindsight acutely sharpened over some forty years, concerning an activity in a different age with different social standards.”
Current challenges to improving medical mistrust
Unfortunately, the medical community still struggles to provide optimal care to everyone. Here, we’ll look at ongoing challenges the medical community faces in regaining public trust.
Medical education
Research investigating the link between medical students or doctors and patient care has supported the need for medical education to address mistrust.
One systematic review found that most healthcare providers had some level of implicit bias, with positive attitudes toward white people and negative attitudes toward Black people. They found that implicit bias might affect patient-provider interactions, treatment decisions, adherence, and outcomes.
Other research has found that medical students rated pain scores lower in Black patients and also had misconceptions about physiological differences between Black and white patients.
Healthcare delivery
Another challenge is the delivery of healthcare services. Undocumented immigrants, for example, are less likely to seek medical care, partially due to the fear of deportation. What’s more, immigrants who are new to the U.S. are more likely to have low health literacy and low English proficiency. These factors limit their ability to navigate our healthcare system and receive appropriate medical care.
Disparities exist, though, even after a patient has successfully navigated our system. For example, Black people are more than twice as likely as whites to be diagnosed with schizophrenia, despite having similar genetic risk for the condition. Another study found that Black, Hispanic, and Asian children were less likely to be diagnosed, and receive care for, ADHD.
These differences in diagnosis and treatment span the entire medical field, not just psychiatry. Researchers even found physicians to be more likely to doubt Black patients than white patients.
Research
Finally, many communities are underrepresented in medical research, potentially leaving them out of advances in treatment. This is perhaps most visible in the lack of diversity in clinical trials. However, even in the preclinical stages there is evidence of racial disparities. Currently, over 95% of cell lines used in research come from people of European descent.
The bottom line
Medical mistrust stems from a long history of abuses, misunderstandings, and prejudices, many of which continue to this day. The infamous Tuskegee study is a classic example, but there are many others.
In our follow-up piece, we’ll look at how healthcare professionals can work to rebuild trust in their communities. Stay tuned.
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