medical racism
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Racial disparities in health care and health outcomes have persisted in the United States for hundreds of years.
Throughout the history of the slave trade in the US, Black people were often used against their will in medical experiments or subjected to forced procedures such as sterilization. These practices persisted even after the end of slavery, with perhaps the most well-known example being the Tuskegee syphilis study. Begun in 1932, this study involved 600 Black men, nearly 400 of whom had syphilis. Although told they would be receiving treatment, the men received no treatment whatsoever, and never gave informed consent for their participation in the study. The Tuskegee syphilis study continued for 40 years, not ending until 1972; many of the participants died of syphilis, and some of their spouses and children were also infected.
Another prominent example involved Henrietta Lacks, a young Black mother who died of cervical cancer at age 31. During her treatment, doctors took samples of her cells without the knowledge or consent of Lacks or her family; those samples were then distributed widely, without her family receiving any profit or benefit. Per Nature, the work done with those nonconsensually obtained samples “underpins much of modern medicine; they have been involved in key discoveries in many fields, including cancer, immunology and infectious disease,” and, more recently, Covid-19 vaccine research.
These are only two of many examples of people of color being used as subjects within the medical system, not only without informed consent but also to the severe detriment of their health, which has contributed to a mistrust in the medical system that persists today.
Women, particularly women of color, were frequently subjected to forced sterilization procedures throughout the 20th century. In one well-documented instance, over a third of women in Puerto Rico were subjected to forced sterilization from the 1930s through the 1970s. Over the same period, medical officials also used women in Puerto Rico as test subjects in clinical trials for birth control, without their informed consent. Acts such as these are deeply tied to the history and legacies of US slavery, colonialism, and imperialism, as well as the history of the eugenics movement (which affected countless people of color, women, and people with disabilities).
The decades of mistrust built through experiences such as these continue to have a major impact on the lived experiences of people of color within the current health care system. The Tuskegee study alone had a measurable impact on the life expectancy of Black men. Today, mistrust in the medical system affects care and outcomes for many health situations including cardiac care. Studies showed it may have contributed to hesitancy around the Covid-19 vaccines among Black Americans when the shots first became available (though later surveys found that Black Americans overcame that hesitancy faster than white Americans).
Mistrust is based not only on historic instances and generational and community information but also on ongoing systemic racism and implicit bias in the health care system that impacts the care people of color receive. Studies have found that Black and Latino patients receive lower quality of care and experience worse health outcomes than white patients for many conditions including heart disease, diabetes, and cancer. Research has also found that, for instance, white participants are overrepresented in many clinical trials and physicians are more likely to underestimate the level of Black patients’ pain compared to other racial groups; a 2016 study found that myths like that Black people’s skin is thicker than white people’s linger even among medical students. Recent studies have found that if Black patients are treated by a Black doctor, it can significantly reduce the mortality gap between Black and white patients in certain types of care.
There has been recent criticism of the lack of representation in disability communities. The hashtag #DisabilityTooWhite was created in response to frequent media portrayals of disability that highlight only white people with disabilities. With this in mind, it is important to ensure that coverage of disability issues features as diverse an array of perspectives as possible.
Additional resources
- Reckoning with histories of medical racism and violence in the USA (The Lancet)
- A Generation of Bad Blood (Atlantic)
- Taking Black Pain Seriously (New England Journal of Medicine)
- Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare (National Institutes of Health)
Summary
People of color have long faced different types of discrimination within the medical system, which contributes to disparities in health outcomes, treatment, and life expectancy. Mistrust is based not only on historic instances and generational and community information but also on ongoing implicit bias in the health care system that impacts the care received by a person of color. Consideration of the forces that continue to shape the experiences people of color have within the health care system is important when writing about someone’s experience with an illness or disability.