Mistrust in Medicine: The Impact of Racism on Healthcare Today

I can remember, when I was very new to chaplaincy, being shocked by the amount of mistrust that patients verbalized towards the healthcare system. It was surprising to hear patients and families question the way in which hospitals operate, let alone the motives of their nurses, doctors, and other members of the healthcare team. My experience of hospitals had always been positive, in the sense that when I was hurt, I went there, and they made me better. Growing up, I had quite a few run-ins with the hospital, and I never once questioned the treatment, the doctors, the nurses, or other staff.

Your experience may be similar to mine, but it is not shared by all. Over time, I noticed a distinct pattern: those patients and families that expressed the most fear and mistrust, while not universally so, were, the vast majority of the time, Black. One encounter, in particular, brought this observation to a tipping point. As a patient who was Black died, a family member became irate and yelled accusingly at the nurses that they had killed the patient. He could not be consoled and eventually left the floor followed by another chaplain and security.

I’m not going to go into more specifics, but the encounter left me and others reeling and questioning the intensity of his accusation. How could he think that those meant to care and comfort would do harm? In processing this situation with my manager at that time who is Black and the other chaplain involved who is Black, they provided more context for the fear and mistrust that exists among Black Americans. There was no excuse for the family member’s actions, and they did not seek to fabricate one; however, my conversation with them provided additional context about how and why that mistrust, fear, and anger could exist. I left that meeting and did a little looking around for more information. I ended up finding Medical Apartheid by Harriet Washington; with the subtitle The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present, it appeared to be the comprehensive book for which I was looking. I had no clue what I had gotten myself into.

In the far recesses of my mind I had heard of the Tuskegee Syphilis Study. I didn’t know much about it; just that it was a massive injustice and that it probably accounted for the mistrust that exists among Black Americans in regard to the medical establishment. For those that don’t know, here’s a recap: The U.S. Public Health Service Syphilis Study at Tuskegee took place between 1932 and 1972. In this study, researchers set out to study the course of syphilis in untreated Black patients. They chose 400 patients, lied to them about the nature of the study, and asked them to go under invasive procedures about which they also lied. As medicines developed that would have treated their syphilis, the unknowing participants were denied them, so that researchers could watch the disease progression.[1] Within the medical community this was no secret and multiple articles were published in medical journals while it occurred.[2] The study ended when a social worker in the CDC provided a journalist with details of the study. The journalist took it public, and the swift public outcry led to the end of the study.[3]  

The details of the Syphilis Study at Tuskegee are included in Medical Apartheid, and are about a quarter of the way through the book.[4] It is incredibly heartbreaking and disturbing to read about the racism that fueled it, as well as, the level of deceit perpetuated by those involved. It has taken me a long time to get through Medical Apartheid because it is so disturbing to read about the incredible cruelty that has been inflicted upon Black Americans throughout American medical history. The Tuskegee Syphilis Study is one painful episode of that long and unjust history. I believe it is important to know this history and understand it because of its impact on our society today.

Today, studies show that Black Americans do mistrust the medical establishment, and a significant contributing factor of this mistrust is this history of race-based exploitation and abuse.[5],[6] Tuskegee often gets a lot of the focus, but these studies indicate that the mistrust is rooted in the historic pattern; Tuskegee was not just a one-off incident of abuse, it was a part of a larger racist system that enabled these incidences of cruelty, injustice, and mistreatment. As the authors of an article in The Journal of Medical Ethics state, the “…victimisation of African Americans by professional medicine was largely a pervasive outgrowth of structure, not the idiosyncratic work of particular individuals.”[7]

Furthermore, I may not have known about this troubling past until reading Medical Apartheid, butthe stories of injustice are passed down in family histories. This is documented in the book The Immortal Life of Henrietta Lacks.[8] It is the story of Henrietta Lacks, a Black woman whose genetic material was taken during treatment for cervical cancer, replicated, and used to make all sorts of lifesaving treatments, allowing corporations and researchers to make billions of dollars. Her family was given nothing, lived in poverty, and had no idea the extent of their mother’s contribution to science and medicine until a journalist established a relationship with them. In a poignant section of the book, one of the family members consistently refuses to seek medical treatment because he has heard that Black people tend to disappear when they go around hospitals. This very thing is documented in Medical Apartheid.[9] So while I may have been unaware of such horrible incidents, they are known amongst portions of Black America, and they have impact.   

I’ve written elsewhere about how this history built upon racist ideas may have an impact upon how Black Americans are treated to this day in healthcare,[10] but it also leads Black Americans to have resistance to participating in research,[11] a refusal to seek treatment,[12] and greater skepticism about interventions when prescribed.[13] In the long run this leads to greater burdens on patients, families, the healthcare team, and the healthcare system as a whole.

Significant strides have been made within the healthcare system to bridge the gap between Black Americans. Nonetheless, a gap remains. Studies cited above still show mistrust, and I believe that a contributor is many within healthcare not knowing and, therefore, not acknowledging the depth of the historic racism and injustice that has occurred. Equal Justice Initiative often writes on social media, “To overcome racial inequality, we must confront our history.” To effectively care for all Americans, those in healthcare (myself included) have to work to overcome the part of American medical history that could be, and has been, easily swept aside and ignored. In working to establish trusting relationships, exhibiting empathy and compassion, and educating Americans about the checks and balances that now exist in the medical system to prevent abuses that occurred in the past, we can create a healthier and more equitable American medical system. We’ve definitely made some progress, and have the opportunity to continue this work now.   

[1] “Race and U.S. medical experimentation: the case of Tuskegee,” https://pubmed.ncbi.nlm.nih.gov/28492710/

[2] “The Tuskegee Study of Untreated Syphilis and public perceptions of biomedical research: a focus group study,” https://pubmed.ncbi.nlm.nih.gov/15303410/

[3] “Race and U.S. medical experimentation: the case of Tuskegee,” https://pubmed.ncbi.nlm.nih.gov/28492710/

[4] Medical Apartheid, Harriet A. Washington, pp.155-185.

[5] “The Legacy of Tuskegee and Trust in Medical Care,” https://pubmed.ncbi.nlm.nih.gov/16080664/

[6] “Distrust, Race, and Research,” https://pubmed.ncbi.nlm.nih.gov/12437405/

[7] “Rasing the ivory tower: the production of knowledge and distrust of medicine among African Americans,” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2598256/

[8] The Immortal Life of Henrietta Lacks by Rebecca Skloot

[9] Medical Apartheid, Harriet A. Washington, pp.115-119.

[10] https://americanhistoryhope.wordpress.com/2020/08/06/american-medicine-and-systemic-racism/

[11] “Perceptions of Clinical Research Participation among African American Women,” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1994515/ & “More than Tuskegee: understanding mistrust about research participation,” https://pubmed.ncbi.nlm.nih.gov/20693733/

[12] “The Legacy of Tuskegee and Trust in Medical Care,” https://pubmed.ncbi.nlm.nih.gov/16080664/

[13] “Understanding African Americans’ Views of the Trustworthiness of Physicians,” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1924632/

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