The Tuskegee Study and the Trauma of Deception
Many events in Black history have played a crucial role in shaping the culture within our community. Among these events, several have significantly influenced how individuals in the Black and African American communities interact with the healthcare system. It’s important to acknowledge the historical inequities faced by African Americans within a system that is expected to nurture them, but instead, has left a trail of deception and mistrust that many have found difficult to overcome. Let’s talk about one of these events—the Tuskegee Syphilis Study.
In 1932, a group of 600 African American men living in Macon County, Alabama, were recruited and encouraged to participate in a study conducted by the U.S. Public Health Service. This study was known as “The Tuskegee Study of Untreated Syphilis in the Negro Male.”
The purpose of this study was to examine the natural progression of syphilis in African American people if left untreated. The men were given a variety of medical tests and procedures but denied the medication that would treat and potentially save their lives. This led to debilitating illnesses and even death.
Although the men were offered various incentives, they were never given a diagnosis or provided with education about their medical condition. They were not informed about key aspects of the study, nor were they made aware of the risks associated with the procedures being performed on them. Additionally, they were never given the option whether to participate or decline. Instead, they were simply told that they were being treated for “bad blood.”
The outcome of this horrific and unethical experiment left emotional and psychological wounds for generations to come. No doubt, the effects of this study would have been different if the men had received informed consent.
Informed consent is a process where your healthcare provider gives you information about your treatment or research study and answers any questions you may have. Additionally, it allows you the freedom to decide whether you would like to participate or not.
Despite this study taking place so many years ago, distrust of the healthcare system remains. Even with new advancement in treatments and changes in policies, people are hesitant to partake in life-saving measures, including being a part of the bone marrow donor registry.
Knowing that, the NMDP (The National Marrow Donor Program) takes measures to ensure that participants receive ongoing communication to fully understand every aspect of the procedure.
That being said, there is a critical need for greater representation in the bone marrow donor registry. Genetics significantly impact donor-patient matching for stem cell transplants. A diverse donor pool increases the likelihood of finding suitable matches.
If you have any questions about the process of bone marrow donation, healthcare professionals are qualified to provide detailed information about the procedure you may be asked to undergo. They can also present it in a way that is easy for you to understand.
If you’re interested in joining the registry or partaking in life-saving measures, ensure that you fully understand what you are about to undertake. Ask as many questions as needed; this will help you grasp the information and gain the comfort level necessary to make an informed decision. We believe that being well-informed will help alleviate fear and anxiety about making important contributions such as this.
Additionally, healthcare professionals must embrace culturally sensitive care by recognizing the significant impact of historical traumas on health-related decision-making. We would also love to see medical organizations that promote equity in the Black community become more involved in spreading awareness about these life-saving measures. This could include addressing fears, helping people find Black bone marrow donors, and educating Black communities about the importance of joining the registry, ultimately making healthcare more accessible for Black patients.
Delving into some events of Black history can be painful, but we can use that pain as fuel to empower ourselves through education and a persistent demand for quality and higher standards. Through knowledge, we can better equip ourselves to reach new heights particularly in healthcare.