It is no secret that vaccine science has become a subject of contention for many Americans. While the rapid development of multiple COVID-19 vaccines was a major achievement for biomedical research and public health, there always remained an underlying concern about vaccine access and acceptance. Vaccine doubt has grown to become a major global issue, with the 2019 measles outbreak being largely attributed to a growing number of unvaccinated children. Polls at that time found that around one quarter of Americans didn’t feel that vaccines are safe. More recently, polling about the COVID-19 vaccine showed that vaccine hesitancy has fluctuated over time, ranging from 27%-50% being reluctant to get the shot since May 2020. While vaccination rates have increased and hesitancy is dropping, there still remains a significant portion of the population that are not vaccinated. For some individuals this is a personal decision to not get the shot. For others, it is not so much a personal decision, but the combination of warranted apathy towards government-run health initiatives and the failure of the American medical community to mend its tattered relationship with people of color (PoC).

According to the CDC, PoC have suffered higher COVID-19-related hospitalizations and deaths compared to White people. However, near the beginning of the vaccine rollout it was widely assumed that Indigenous, Hispanic, and Black individuals would show greater hesitancy towards getting vaccinated. This assumption has proven faulty, however, with hesitancy being demonstrated mostly by White Americans rather than PoC, with four out of five vaccine-hesitant communities being predominantly white. In fact, Native Americans boasted the fastest vaccination rate in the United States as of July 2021. Although vaccine rates for PoC continue to lag behind White Americans in some regions, such as urban Native American communities and the South, this is now believed not to be exclusively attributed to mistrust of the vaccine’s safety but rather accessibility.

Instead, it seems that slow vaccine rates among PoC are due to a combination of several factors such as lack of access, confusion or misinformation regarding vaccine availability, or even the fear of being reported to the government if not a citizen. One can look at the core of all suspected causes for slow vaccination rates among PoC and see one common underlying theme: an unhealthy relationship between PoC and the American medical system and government. Indeed, lack of confidence in the government and medical community makes PoC feel it is simply “not worth” trying to get the vaccine. This is confounded by the medical system’s lackluster vaccine focus on minority-rich communities. How has the relationship between PoC and the healthcare system become so faulty? How has this resulted in slower vaccination rates for the most at-risk communities? To answer this, one must look at the history of their victimization by the American medical and scientific communities, as well as the many health inequities that still persist to this day.

Withholding treatment, theft of the body, and genocide

Two prominent examples of medical racism against Black Americans are the Tuskegee Syphilis Study and the nonconsensual experimentation on Henrietta Lacks’ cells, i.e., HeLa cells. The former occurred throughout most of the 20th century, beginning in the 1930s. The Public Health Service and the Tuskegee Institute sought to record the symptoms and progression of syphilis, a major health problem for all Americans at that time. The study involved over 600 Black men, a majority of whom were known carriers of syphilis. However, the researchers did not properly inform the subjects of the study about the true nature of their condition, which they knew only as “bad blood”. The study offered no treatment for the disease, even when antibiotics were found to be an effective treatment in 1945. For 40 years, the subjects – Black Americans suffering with a treatable illness – were tracked and observed all while being prevented from seeking help or understanding their true condition. Finally, a 1972 report revealed the true nature of the Tuskegee Syphilis study, causing mass outrage and encouraging Black Americans to be wary of medical institutions. It is a permanent stain on the American medical and science communities, especially considering the racism displayed by the researchers, who selected only Black subjects when syphilis was a widespread issue for White Americans as well at the time.

Another prominent example of Black Americans suffering from medical injustice was John Hopkins Hospital’s quiet use, distribution, and profiting from Henrietta Lacks’ body. Henrietta Lacks was diagnosed with cervical cancer by Johns Hopkins’ physicians in 1951. As was routine procedure at the time, her cells were taken and studied without her consent or knowledge. When it was discovered that her cells were able to divide indefinitely, her cells were widely shared by scientists for use in biomedicine and cancer research. Although her cells have been used to develop invaluable and highly lucrative medical treatments, including Nobel Prize-winning research into virus-induced cancers and even COVID-19 vaccine development, no effort was made to reach out to the Lacks’ family and inform them of their relative’s cells being shared. Ironically, one of science’s greatest prides, the gracious sharing of information and samples, was used to broadly spread the contributions taken without consent from a Black patient’s body.

Indigenous bodies have also been unwillingly used to benefit American biomedical research. In the late 1980s and early 1990s, the Havasupai nation of the Grand Canyon willingly donated their blood to the Diabetes Project at Arizona State University. At that time, roughly half of Havasupai adults suffered from type 2 diabetes. They trusted the researchers would use their blood to help their community. However, in 2003, Havasupai council member Carletta Tilousi discovered that the blood samples, and the DNA within, was used to conduct research on schizophrenia and population inbreeding. Similar to Henrietta Lacks and her family, the Havasupai were not made aware that their DNA would be used at the discretion of the institution, without their consent, for further applications.

Indigenous medical autonomy was also egregiously violated in the 1970s, when up to a quarter of Indigenous women were wrongfully sterilized by the federally run Indian Health Service. The 1970 Family Planning Services and Public Research Act, also called Title X, was overwhelmingly passed by Congress to provide federal funding for low-income families and better develop family planning services, but also provided funding for contraception and sterilization. Title X permitted easier and quicker access to hysterectomies which, in addition to weak informed consent requirements and systemic racism in the healthcare system, resulted in the sterilization of up to 1 in 4 indigenous women. Although the U.S. General Accounting Office admitted to only 3,406 hysterectomies, medical record keeping and documentation is flimsy at best, leading researchers to believe that 3,406 is a severe underestimation. Sterilization of minority groups is classified as genocide by the United Nations. Although the sterilization of Indigenous women in the 1970s has been claimed to be accidental, the damage it caused for Indigenous perception of the medical community is only exceeded by the permanent damage done to the bodies of Indigenous women.

Indeed, historical acts of medical and scientific racism like these and countless others have a profound effect on PoC’s view of vaccines and medicine. And this article does not even begin to cover every act of medical injustice felt by PoC in America. A study conducted by COVID Collaborative documented a significant connection between Black Americans distrusting the COVID-19 vaccine and their knowledge of the Tuskegee study. Many Indigenous nations have indicated that their vaccine hesitancy is due to historical distrust of the government and the medical and science communities. However, when speaking to experts familiar with the minority-experience with medicine, it becomes evident that medical mistreatment is not solely historical.

“People’s lived experiences now”

Dr. Jennifer James, PhD, a sociologist and bioethics researcher at UCSF, believes that it’s “people’s lived experiences now” that has influenced PoC’s perceptions of medicine. James studies people’s experiences with health and illness, particularly Black, trans, and gender non-conforming people, and also researches the health of incarcerated individuals. By speaking to many PoC and listening to their experiences with the medical field, James has firsthand observed a racial disparity in healthcare access and quality. Although she agrees many people may be wary of the COVID vaccine due to events like the Tuskegee experiment, James holds that the primary issue with vaccine distribution has been a non-effort to “listen to communities”.

“The way we think about trust[ing medicine and science] is flawed,” James states. “We make trust all about Tuskegee… there’s Tuskegee and thus Black people don’t trust medicine.” James disagrees that historical acts of racism are the primary cause for PoC distrusting medicine or science. “Most people who don’t trust science or medicine, it is due to their personal experiences, their family’s and friend’s experiences. They have a lifetime of going to the doctor, trying to access care, and having negative experiences.”

It is widely reported that PoC have worse health prospects, higher rates of chronic illnesses, and even higher infant mortality rates. PoC generally receive worse healthcare and are victim to longstanding racial biases present in the medical community. Indeed, reports show that nearly 70% of Black Americans feel the medical establishment treats them unfairly due to their race. Similarly, an NPR study found that nearly a quarter of Indigenous peoples felt they were discriminated against by their physician. For Hispanic Americans, 36% felt their identity impacted their medical treatment. All this makes the current lackluster vaccine progress in communities of color seem tragically consistent with previous healthcare trends. “To discount it as ‘Black people don’t trust medicine because of something that happened decades ago [i.e., Tuskegee]’, it lets science and medicine off the hook for what we [the science and medical community] are doing now,” Dr. James says.

Moreover, it should be mentioned that personal experiences of racism and historical instances of racism are not mutually exclusive. The blood of the Havasupai, used without consent in various experiments, still runs through the veins of Indigenous souls to this day. Indigenous women who should have been able to give birth are still alive today. HeLa cells are used widely throughout research institutions globally, including UC Berkeley.

Professor Tina Sacks, from UC Berkeley’s School of Social Welfare, agrees the health inequities felt in the past by PoC persist strongly to this day. “What is most troubling about Tuskegee is that the federal government withheld treatment from Black people knowing they had syphilis.” Professor Sacks studies health disparities affecting Black Americans across different economic classes and has also documented the negative lived experiences of Black Americans when they attempt to get healthcare. “You still see that Black people are less likely to get the standard of care that they need… you see them [Black people and other PoC] get diagnosed at later stages with cancers and other health conditions,” Professor Sacks explains.

As mentioned previously, anti-vaccine sentiments are believed to be predominantly held by White Americans not PoC. However, even when you find the communities of color that are vaccine-hesitant, it can be hard to compare this with that of White Americans. When asked how the vaccine hesitancy of anti-vaccination groups (also widely referred to as the “anti-vaxxers”) compares to a PoC’s, Professor Sacks sees them as “fundamentally different”. Professor Sacks believes that anti-vaccination groups base their hesitancy off of widely debunked vaccine myths and a perceived violation of health rights, rather than instances of historical marginalization and racial health inequities. Anti-vaccination groups are more concerned with “exercising an individual right rather than a collective responsibility,” in Professor Sacks’ words.

However, James states the issue is overly simplified. “I think we put people into a box, like you either do everything your doctor says or you’re an ‘anti-vaxxer’, when a lot of people fall in-between. The framing is incorrect,” Dr. James believes. Especially regarding PoC, Dr. James acknowledges the failures of the medical and science establishments. “We sort of perpetuate this idea that you just have to trust science when science has just not proven itself to be trustworthy! They haven’t been given a reason to trust medicine and science.”

“Amplifies what is already there”

Fortunately, vaccine hesitancy for all Americans is dropping significantly as the vaccine distribution continues. “What I am in some ways more concerned about is access to the vaccine,” Professor Sacks says. “PoC, incarcerated peoples, people with disabilities, undocumented [folks] – getting [vaccine] access to those populations is more important than hesitancy.” Professor Sacks is quick to point out the recent reports of people traveling to areas with a high Black, Indigenous, or Hispanic population to score easier vaccine access which takes away the precious few shots meant for essential workers and low-income families.

Thus, for PoC it seems vaccine hesitancy isn’t the phrasing that should be used to explain the lower vaccine rates. This is easily countered by looking at rapid vaccination of Native American communities and the disproportionate hesitancy being displayed by White Americans. Rather, it is a complex, historical combination of lack of confidence in the American government and medical system, as well as the longstanding medical inequities experienced by PoC across the country. Where the distrust of medicine by White Americans manifests as a personal decision to prioritize one’s own safety over herd immunity, for PoC this distrust leaves little room for personal influence. PoC are often unable to pursue the vaccine due to circumstances outside of their control. This is not new, but an enduring remnant of past medical injustice and current inequity. “The pandemic shows the profound vulnerability that PoC face in this country,” Professor Sacks states. In some ways, Sacks believes it “amplifies what is already there.”

The past history of injustice felt by PoC must always be remembered. What is more important is discussing what remained in the past, what persists to this day, and how this affects the health of PoC. In June 2021, months into the vaccination effort, it was reported that 99.9% of COVID-19 related deaths were among unvaccinated individuals. How many of these deaths were caused by a personal decision and how many were due to longstanding circumstances outside of one’s control? At this point in the pandemic. we must ask the haunting question of how many lives could have been saved if the relationship between the American medical system and PoC was not so damaged? Issues regarding vaccine availability, misinformation, or confusion have the power to impact a significant portion of the population. However, it is clear that PoC are the ones that suffer the most, both then and now.

----- Dominik Aylard is a graduate student in molecular and cell biology

Designs by Santiago Yori Restrepo