By Adrienne Garbarino, MSN, FNP-BC and Astra Watts, MPH
Definition and Relevance
Medical mistrust is engraved in United States history and continues to affect underserved/minority communities. It is defined as the lack of trust in or suspicion of medical organizations. The existence of medical mistrust is evident in today’s healthcare system as a contributor to health disparities and poor health outcomes in groups who experience it.[i] In 2020, a Kaiser Family Foundation Poll showed only 56% of black adults trusted their local hospitals to do what is right for them or their community.[ii] Medical mistrust was further evident during the COVID-19 pandemic. Trust in local, state, and federal government agencies, including health departments, and in personal physicians or other healthcare providers was strongly associated with likelihood of becoming vaccinated against COVID-19.[iii], [iv], [v] Karna conducted survey research finding that this is also true for parents who decide to have their children vaccinated.[vi] Although black and brown communities were most susceptible to COVID-19 complications and death, these communities made up the largest percentage of vaccine hesitant groups prior to the regulatory approval of COVID-19 vaccines and rollout of mass vaccination programs.[vii]
Minority communities have a lingering distrust of health care, providers, and health systems. This distrust gained its footing over 400 years ago; when enslaved people were too old or sick for monetary gain, their enslavers would sell them to physicians for use in experiments. [viii] The act of experimenting on black people progressed many years later during the U.S. Public Health Service Syphilis Study at Tuskegee. This study was a non-consent clinical experiment conducted between 1932 and 1972 to observe the natural history of untreated syphilis, despite the known treatment of choice, penicillin, being widely available by 1943.[ix]
The collection and use of Henrietta Lacks’ cells without her knowledge or consent is another historical event leading to medical mistrust. Henrietta Lacks was a young black woman whose cervical cancer cells were collected in 1951 and used for research and scientific advancement. Tissue samples stolen from the tumor in her cervix created the first immortal human cell line. While these incredible cells called “HeLa” cells are helping millions today through studying the effects of toxins, drugs, hormones and viruses on the growth of cancer cells, Mrs. Lacks’ story illustrates the racial inequities that are embedded in the research and health care systems.[x]
Modern Contributors to Medical Mistrust
Since these examples of unethical practices, humans have made some progress. The Institutional Review Board (IRB) process introduced in 1966 requires an independent review of the study plan prior to any trials involving human subjects. The Nuremberg Code of 1974 is recognized as the first legal step for protecting human subjects by required informed consent. The Belmont Report of 1979 requires integration of the ethical principles of respect, beneficence, and justice in any research involving human subjects.[xi]
Despite these protections, discrimination and racial bias, intentional and unintentional, still occur today, perpetuating medical mistrust in monitory populations. A 2021 poll from the Alzheimer’s Association found “Half of Black Americans (50%) report they have experienced health care discrimination; more than 2 in 5 Native Americans (42%) and one-third of Asian Americans (34%) and Hispanic Americans (33%) likewise report having experienced discrimination when seeking health care.”[xii]
Even when unintended, the most well-meaning providers have implicit bias that subconsciously affects the care delivered to minority patients. A 2016 study examined implicit bias in medical students as it relates to pain management. It found that half of white medical students and residents held some belief that there were biological differences resulting in black people experiencing lower levels of pain than white people. This type of bias held by medical providers results in medical disparities and inequitable health care experiences.[xiii]
People may trust individual health care providers, yet still be suspicious of the motives of the broader health care system and institutions such as hospitals, insurance companies, and government agencies. For example, the Kaiser Family Foundation poll showed 59% of black Americans trusted doctors, while only 44% trusted the healthcare system.[xiv]
Medical mistrust is prevalent among minority populations, leading to poor health outcomes. Although rooted in history, present-day practices of individuals and institutions perpetuate medical mistrust. Stay tuned for more blogs in this series that further explore medical mistrust and strategies that the public health and healthcare communities can implement to increase trust and improve health equity.
[ii]KFF/The Undefeated Survey on Race and Health – Main Findings – 9557 | KFF
[iii]Viskupič F, Wiltse DL, Meyer BA. Trust in physicians and trust in government predict COVID-19 vaccine uptake. Soc Sci Q. 2022 May;103(3):509-520. doi: 10.1111/ssqu.13147. Epub 2022 Apr 15. PMID: 35600052; PMCID: PMC9115527.
[iv]Stoler, J., Enders, A.M., Klofstad, C.A. et al. The Limits of Medical Trust in Mitigating COVID-19 Vaccine Hesitancy among Black Americans. J GEN INTERN MED 36, 3629–3631 (2021). https://doi.org/10.1007/s11606-021-06743-3
[v]Peter G. Szilagyi, Kyla Thomas, Megha D. Shah, Nathalie Vizueta, Yan Cui, Sitaram Vangala, Craig Fox, Arie Kapteyn, The role of trust in the likelihood of receiving a COVID-19 vaccine: Results from a national survey, Preventive Medicine, Volume 153, 2021, 106727, ISSN 0091-7435, https://doi.org/10.1016/j.ypmed.2021.106727
[vi]Unpublished research of 3,591 parents conducted by Karna in August 2-13, 2021 for CDC.
[vii]Public Trust and Willingness to Vaccinate Against COVID-19 in the US From October 14, 2020, to March 29, 2021 | Infectious Diseases | JAMA | JAMA Network
[x]The Immortal Life of Henrietta Lacks – PMC (nih.gov)
[xi]Human Subjects Timeline – Office of NIH History and Stetten Museum
[xii]alzheimers-facts-and-figures-special-report-2021.pdf, page 3
[xiii]Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites | PNAS
[xiv]KFF/The Undefeated Survey on Race and Health – Main Findings – 9557 | KFF