“I’m not upset that you lied to me, I’m upset that from now on I can’t believe you.” – Friedrich Nietzsche
These lines ring so true today when one looks at the COVID vaccination rate in hard hit states like Alabama, West Virginia and other states with significant black populations. Many reasons are cited for not taking the vaccine by Black Americans, the most prominent one is “I don’t trust the US Administration”. Even though Black Americans suffer the highest poverty and unemployment rate, their mistrust towards the US government to provide equitable healthcare is very high. The 2020 census provided data stating the poverty rate for Blacks was 18.8% while the poverty rate for Whites was 7.3%, with 31.2% of Blacks in Alabama being below the poverty line.
The Tuskegee Experiment: Its Failure and Lasting Impact
This lack of trust stems from several reasons but the one of the most important ones is the Tuskegee Experiment. The government’s betrayal towards the Black American community in the mid 1900s led to a series of preventable syphilis-related deaths, misconduct by the federal government, and a countless number of unethical medical practices.
The United States Public Health Service (USPHS) initiated a syphilis study, officially called the “USPHS Syphilis Study at Tuskegee”, to observe the progression of the disease. They gathered 600 Black American men, from Macon County, Alabama, who were all assured free medical care if they enrolled. Of the 600 men, 399 had latent syphilis, the treatment group, and the remaining 201 were the control group. Informed consent was not retrieved from any of the participants, one of many unethical practices that took place. Also, the subjects were told that they were being treated for “bad blood”, a local term used to describe several ailments, not specifically syphilis. As the USPHS wanted to observe the progression of the disease, they withheld lifesaving treatment given the assumption of free healthcare.
In 1932, when the study began, there was no treatment or cure for syphilis, however, in 1943, penicillin became a widely accepted treatment for this disease. The subjects in the study were denied this treatment. Researchers from the USPHS went out of their way to convince local physicians in Macon County to not supply any penicillin to them; resulting in many preventable illnesses, aggravation of disease, and about 130 deaths. As a result, syphilis continued to affect the participants and affected their spouses and kids.
The infamous 40-year government study led to deep mistrust with vaccines, healthcare, and public health officials.
Henrietta Lacks and the Birth of Bioethics
Another well known case of experimentation of nonconsensual study affecting the Black community was done to Henrietta Lacks, a poor African American woman. Lacks had cervical cancer and reached out to Johns Hopkins University for treatment. Instead of disposing her biopsy cells to medical waste, they were taken by Dr. George Gey, a cancer and virus researcher. Dr. Gey observed how the cells, named “HeLa Cells”, would continue to replicate and never die, unlike anything he had ever witnessed before. He created a cancer cell that could be grown outside of the body using Lack’s cells. Henrietta nor her family were never asked about their consent for the use of her cells for medical research. Even after she passed, her cells were continuously used for advancing cancer and infectious disease research. Her family learnt about this usage by accident in the mid-1970s, much after a flourishing for-profit industry while the Lacks were living in poverty after 25 years.
Both the Tuskegee Syphilis Study and use of HeLa Cells, contributed to the unethical and inhumane practices affecting the Black community and led to the development of modern medical ethics. In the late-1970s, ethical boards and commissions were formed to create, review, and implement guidelines and codes of ethics. Protocols on clinical trials, informed consent, debriefing, and medical research have been created and continue to adapt to new diseases, advancing technologies, and evolving societal views and acceptances.
90 years later: The Healthy Measure of Mistrust Remains
This prolonged and systemic mistrust of the medical system has caused Black Americans to be more hesitant to take the COVID-19 vaccine. As shown by data from early 2021, more than 60% of White Americans had access to the vaccine, with less than 6% of Black Americans, while it was the Black community who was disproportionately affected . Within Alabama, there is a lot of skepticism and anxiety about the vaccine from the general Black population. However, as the sole provider of vaccines, Veteran Affairs Tuskegee campus has set up various vaccine clinics and overtime, Black residents do come in for a shot.
“The more people hear about the vaccine, the more they know someone else who’s received the vaccine, the more they see how well they did, the more comfortable they become with the vaccine,” says Dr. April Truett, the VA’s infectious disease physician.
No Investment, No Returns
The National Institute of Minority Health and Health Disparities (NIMHD), whose mission is to provide research and innovation for minority communities, is a part of the overall National Institute of Health (NIH). In 2020, the NIH received a budget of $41 billion and only 0.8% went towards the NIMHD. This number is disproportionately low. These numbers show the government’s lack of will to invest in research in healthcare for minorities, which is the baseline problem. The government has an ethical imperative to invest in the minority health programs to avoid any huge cost they may have to pay down the line. Without proper funding, the NIMHD will not be able to provide proper healthcare research and support for these communities.
The mistrust towards the healthcare system among Black Americans is caused by historical and current abuse. The coronavirus pandemic had a disproportionate impact on people of color. In Tuskegee, there is no general hospital for the public and coronavirus testing wasn’t as available early on, causing more disease and death. Now, nearly a century has passed and we are still struggling to have an equitable healthcare system, with the unequal distribution of testing and vaccines, unequal hospital resources, etc.. The combination of both historical and present day accessibility and reliance on the health care system, causes many Black Americans to not take the vaccine and to continue to be hesitant.
References
Audra. (2021, October 13). Why many Black Americans changed their minds about Covid Shots. The New York Times. The New York Times. Retrieved November 6, 2021, from https://www.nytimes.com/2021/10/13/us/black-americans-vaccine-tuskegee.html?auth=login-google
Black community tackles vaccine hesitancy in Alabama but Trump supporters resist. (2021, June 3). The Guardian. Guardian News and Media. Retrieved November 6, 2021, from https://www.theguardian.com/us-news/2021/jun/03/alabama-vaccine-hesitancy
Butanis, B. (2021, July 27). The legacy of henrietta lacks. Johns Hopkins Medicine, based in Baltimore, Maryland. Retrieved November 6, 2021, from https://www.hopkinsmedicine.org/henriettalacks/
Decades later, infamous Tuskegee syphilis study stirs wariness in black community over covid-19 vaccine. (2021, February 5). Los Angeles Times. Los Angeles Times. Retrieved November 6, 2021, from https://www.latimes.com/world-nation/story/2021-02-05/la-na-tuskegee-study-black-distrust-access-vaccine
Henrietta lacks: Science must right a historical wrong. (2020, September 1). Nature News. Nature Publishing Group. Retrieved November 6, 2021, from https://www.nature.com/articles/d41586-020-02494-z
How the Tuskegee Experiments Changed Clinical Trials. (2020, December 15). M3 Wake Research. Retrieved November 6, 2021, from https://www.wakeclinical.com/how-the-tuskegee-experiments-changed-clinical-trials/
Nix, E. (2017, May 16). Tuskegee Experiment: The infamous syphilis study. History.com. A&E Television Networks. Retrieved November 6, 2021, from https://www.history.com/news/the-infamous-40-year-tuskegee-study
Suzanne Mahon RN. (2021, October 22). The story of Henrietta Lacks sheds light on ethical considerations in genetic testing. ONS Voice. Retrieved November 6, 2021, from https://voice.ons.org/stories/the-story-of-henrietta-lacks-sheds-light-on-ethical-considerations-in-genetic-testing
Tuskegee Study – Timeline – CDC – NCHHSTP. (2021, April 22). Centers for Disease Control and Prevention. Centers for Disease Control and Prevention. Retrieved November 6, 2021, from https://www.cdc.gov/tuskegee/timeline.htm
The Tuskegee Syphilis Study and its implications for the 21st Century. (2021, September 14). SocialWorker.com. Retrieved November 6, 2021, from https://www.socialworker.com/feature-articles/ethics-articles/The_Tuskegee_Syphilis_Study_and_Its_Implications_for_the_21st_Century/
One Response
Another outstanding post, full of facts and science… Thank you.