Think fast: What is the worst breach of trust between the medical field and the African American community? Odds are the first thing that came to mind is the Tuskegee Experiments.
I intend to accomplish a few things with this article. First will be a short overview of what exactly happened during the Tuskegee Experiments. Second, I will go over what was learned from the experiment. Lastly, I will delve into why it is important that we as a community not get bogged down by the horrors of the past with respect to this tragedy. This will hopefully clarify some misconceptions that are currently circulating. There will be a reference section at the end with links to the sources I used for the article, should anyone wish to follow up.
In short, back in the 1930s, a cohort of 600 African American men (399 with syphilis and 201 without) were enrolled in a study by the US Public Health Service (USPHS). The goal of the study was to determine the progression of syphilis in African Americans . At the time there was no known effective treatment for syphilis. The USPHS study worked in conjuction with the Tuskegee Institute and recruited participants many of whom were illiterate sharecroppers from poor areas of Macon County, Alabama. The participants were offered incentives such as free medical exams, travel to/from the clinics, free meals on exam days, and promises of survivor/burial benefits to their families after their deaths . It is important to not that it is a common misconception that the Tuskegee Experiments involved injecting subjects with syphilis. As explained above, the main issue was that the individuals who were already diagnosed with syphilis did not receive any treatment.
The experiment was initially only supposed to last for 6 months, but ended up lasting over 40 years. The beginning of the end occurred in 1972 when Peter Buxton, a venereal disease interviewer for the PHS, spoke to reporter Jean Heller of the Associated Press about the inner workings of the experiment. Heller’s story told the tale of scores of participants who died, as well as how their wives and children were subsequently infected despited penicillin being a well-known treatment at the time . This story in turn, led to an international public and media firestorm prompting multiple responses from several US federal agencies, most notably the US Health and Science Ad Hoc Advisory panel. The panel found that many research protocols in the study were either ignored or flawed to begin with. The panel ultimately concluded that the study was unethically justified and the study was officially ended in October of 1972 .
In 1973 a class action lawsuit was filed on behalf of all of the men in the study and their families. The case was settled for ≈ $9 million dollars. Additionally, the US government started the Tuskegee Health Benefit Program which provides free medical and burial services to surviving participants, their wives, their widows, and children. Also the Tuskegee Syphilis Study Legacy Committee successfully petitioned President Clinton to officially apologize for the study on behalf of the US government in 1996 .
For Science: We learned more details about late stage syphilis, more specifically the neurological and cardiovascular issues that occur.
For future research: The Tuskegee tragedy highlighted the importance of proper informed consent when it comes to scientific studies.
About the African American Community: The Tuskegee tragedy has done catastrophic damage to the relationship between the medical institution and the African American community. Because of it, many African Americans are apprehensive of scientific studies, researchers, and doctors.
Below is a chart listing the number of different health disparities between African Americans and their white counterparts. I would like to draw your attention to a few key statistics in the below picture:
So what exactly is causing this disparity? Well the cause is multifacted and includes: access to care, possession of health insurance, socioeconomic differences, genetic predispositions (a smaller factor than people would believe) and cultural differences. So most of the causes above are relatively self-explanatory and you can probably come up with ways to fix them on your own. But let us talk some about the cultural issues in our community and how they relate to this article.
When an earth-shattering breach of trust like the Tuskegee Experiement occurs, there are often major, long lasting effects. After everything came to light, there was an understandable spike in the amount of mistrust the Black community had for the medical establishment. So if you look at the health of the Black community from the 1970s forward, it did improve some as racism and attitudes of cultural superiority between whites and African Americans decreased. Our people began to have better access to care, but the lasting stigma of Tuskegee is there, potentially causing them to avoid being seen by a doctor.
Heart disease, stroke, and diabetes are all heavily influenced by lifestyle choices, namely poor diet and lack of exercise. They are manageable by making changes to that lifestyle and via taking medications to correct the harmful consequences (blood pressure medicine, diabetes medicine, insulin, etc). Cancers on the other hand can have a myriad of causes, but one of the best tools that we have against cancer is surveillance through proper screening.
While it is difficult to quantify exactly how much travesties like Tuskegee affect overall health in the Black community, you can use your own anecdotal experience to try to gauge how much of the community is aware of what happened. You have probably heard of elderly grandmas and grandpas avoiding the doctor for fear of being made sick. You may have heard of Black people avoiding being organ donors because, “if you’re an organ donor, they don’t try as hard to save you.” Ironically, I have asked some people who have made that claim whether they would want an organ transplant if they needed one and they all answered yes.
So I think some of the take home points are to remember that the experiment was wrong, the people doing it were wrong, but that does not mean that the medical establishment itself is wrong. Some might argue the opposite since there were elements of the medical establishment and the government itself that were involved in the tragedy. While this is true, just as people change, so do establishments, as they too are made of people. Ignoring the capacity for change can lead to a gradual worsening of the health of our community as illustrated in the above graphic.
Thanks for reading my article. Before I finish up I will insert a shameless plug here for Be The Match. This is a website that allows you to sign up to be a bone marrow donor for someone who has leukemia and needs a transplant. This is important because bone marrow matching is more complicated than regular blood typing. There are many minorities out there with rare bone marrow types that die because of the lack of minority donors. So go sign up even if you are not a minority, because the recipient will be someone else’s kid or maybe even one of your own friends or family. Ok I am off my soapbox. Good day and God bless.