By Charisse Fuller and Trae Garvin
In the United States, February is nationally known as Black History Month. In African American culture it is a time to honor, celebrate, and pay tribute to the accomplishments of African Americans who have paved a path forward. It is also a time for reflection and acknowledgment of the past struggles that remain existent today.
Historically, African Americans have unknowingly been subjected to unethical healthcare experiments resulting in mistrust of the healthcare system. This article aims to highlight the roots of this mistrust, by reviewing key historical events that have shaped the African American community’s relationship with healthcare. Though some of these past experiences have positively influenced healthcare laws and regulations regarding ethics in research, healthcare data shows that there is still a need to create equity and trust in the healthcare system for African Americans.
Roots of Mistrust
Understanding how these historical events have shaped African Americans apprehensiveness to receiving healthcare is vitally important for healthcare professionals to gain consent, build a system of trust, and provide competent medical care.
The Tuskegee Syphilis Study (1932–1972)
For decades African Americans have fallen victim to unethical medical practices that have resulted in harm, negative health outcomes, and loss of life. One of the first documented instances is the Tuskegee Syphilis Study that occurred in the 1930s through the 1970s. This study was conducted in Alabama on Black men who were told they were receiving free healthcare from the U.S. Public Health Service. These men were used to study the progression of untreated syphilis, which resulted in the spread of the disease in the African American communities and high casualty rates among participants. According to the AMA Journal of Ethics (Journal of Ethics, 2009), “Following the publicity of the study, the National Research Act became law in 1974 and prompted the creation of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research.”
Henrietta Lacks and the HeLa Cells (1951)
Further examining historical unethical healthcare practices, the story of Henrietta Lacks is another encounter that underscores exploitation in African American history. In 1951 the cells of Henrietta Lacks were taken and used for research without her knowledge or consent. As researchers utilized these cells to develop cures and other groundbreaking medical advances, Henrietta’s contributions to these medical advancements went unrecognized. In 2013 descendants of Henrietta Lacks and the National Institutes of Health (NIH) agreed on a settlement regarding usage of the HeLa cells that includes committee participation of Lacks’s family members in future use of HeLa Cells and acknowledgment of Henrietta Lacks in any related publication (NIH, 2013). Even today, HeLa Cells continue to be extremely instrumental in medical research.
Mississippi Appendectomies (Mid-20th Century)
A final event for review concerning medical negligence of African Americans in the healthcare system involves the forced sterilization of Black women in the South referred to as the “Mississippi Appendectomies.” During the mid-20th century Black women primarily from marginalized communities were sterilized without their knowledge or consent. These procedures were often presented as medically necessary appendectomies, when in fact these acts were a deliberate attempt on controlling the African American population.
These unfortunate events are a staple in African American history and serve as a deep-rooted reminder of why there is a lack of trust in the healthcare system amongst African Americans. A path forward to rebuilding trust requires deliberate efforts for policy reform in medical research ethics and gaining informed consent.
Lasting Impacts on Health of African Americans
Expanding on the historical foundation, it is essential to understand how these events continue to impact the health of African Americans today. A continuing pattern of mistrust in the healthcare system has negative impacts on health outcomes in the African American community.
The onset of the COVID-19 pandemic in late 2019, is a recent reminder that the need is still apparent for building trust in the healthcare system. Data reported by the Centers for Disease Control and Prevention (CDC) reflect that African Americans were among the lowest vaccinated groups during the COVID-19 Pandemic (CDC, 2024) (Figure 1). While this is often attributed to the lower socioeconomic status and inequitable access to resources of this minority group, a national survey conducted by the National Foundation for Infectious Diseases (NFID) revealed, “Lack of trust in COVID-19 vaccine development/rollout and hesitancy toward flu and COVID-19 vaccines underscore a broader view among Black adults that the US healthcare system treats individuals unfairly based on their race or ethnic background.” (NFID, 2021).
Figure 1
Building a Path Forward: How to Gain Trust
As we reflect on these past injustices, it is important to recognize the need for continued work to heal these wounds and create a more equitable healthcare system for future generations. A path forward to rebuilding trust entails deliberate efforts in diversifying the healthcare workforce, which can help foster trust and aid in the provision of more culturally competent care. Furthermore, continuing efforts for policy reform and transparency from healthcare agencies are essential. By continuously engaging with African Americans to address their healthcare needs and actively working towards inclusive healthcare, we will be honoring the past, while striving for a better future.
References
Khin-Maung-Gyi, F. (2009, April). The History and Role of Institutional Review Boards: Local and Central IRBs, A Single Mission. ‘AMA Journal of Ethics’. Retrieved from [https://journalofethics.ama-assn.org/article/history-and-role-institutional-review-boards-local-and-central-irbs-single-mission/2009-04](https://journalofethics.ama-assn.org/article/history-and-role-institutional-review-boards-local-and-central-irbs-single-mission/2009-04)
National Institutes of Health (NIH). (2013, August). NIH, Lacks family reach understanding to share genomic data of HeLa cells: New NIH policy requires researchers to apply for access to the full genome sequence data from HeLa cells. ‘National Institutes of Health’. Retrieved from [https://www.nih.gov/news-events/news-releases/nih-lacks-family-reach-understanding-share-genomic-data-hela-cells](https://www.nih.gov/news-events/news-releases/nih-lacks-family-reach-understanding-share-genomic-data-hela-cells)
National Foundation for Infectious Diseases (NFID). (2021, February). National Survey: Black Adult Perspectives on COVID-19 and Flu Vaccines. ‘National Foundation for Infectious Diseases’. Retrieved from [https://www.nfid.org/resource/national-survey-black-adult-perspectives-on-covid-19-and-flu-vaccines/](https://www.nfid.org/resource/national-survey-black-adult-perspectives-on-covid-19-and-flu-vaccines/)
Centers for Disease Control and Prevention (CDC). (2024, April). COVID Data Tracker. ‘Centers for Disease Control and Prevention’. Retrieved from [https://covid.cdc.gov/covid-data-tracker/#archived](https://covid.cdc.gov/covid-data-tracker/#archived)