As discussed in The Immortal Life of Henrietta Lacks, oppressed groups of people have often been the subjects of cruel experimentation. Lacks herself distrusted doctors and scientists at Johns Hopkins, but this fear also stemmed from an inability to fully understand the methods used by her doctors. Her doctors used cancer treatment methods which are now considered inhumane and brutal, and instead of curing her cancer, the methods spread her cancer throughout her abdomen, ultimately torturing her until her death. An autopsy with consent obtained from Lack’s underinformed family revealed just how ineffective the cancer treatments had been. Doctors took more of Lack’s cells during the autopsy, growing them at the Tuskegee Institute.
The Tuskegee Institute not only stole Henrietta Lack’s cells, but they also experimented on and exploited 1,782 black men who happened to live in an area with high syphilis transmission rates. The doctors already had the tools to treat syphilis, although those treatments are considered archaic now. Instead of treating the infected men and their families, the researchers observed the spread of the disease in the individuals and in the overall population for forty years. In 1997, the United States formally apologized for its role in the study. In his press release, President Bill Clinton condemned the research, saying, “The United States government did something that was wrong – deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens,”. In the apology, President Clinton pledged to help more people of color enter medical fields and research, but he said it himself – nothing can ever make up for this atrocity.
The Tuskegee study came to five conclusions about the spread of syphilis. The study’s first conclusion states that the researches found their groups, men of comparable ages, 399 with syphilis and 201 without syphilis, provided reliable information on the morbidity of untreated late syphilis. The researchers also found that the cardiovascular system, particularly the aorta, is commonly involved in untreated late syphilis, and these cardiovascular problems were found to reduce life expectancy. Through their observations, the researchers also concluded the following: “Cardiovascular and central nervous system involvements were from two to three times as common in the untreated syphilis group as in a comparable group receiving even inadequate treatment.” The researchers had determined that even poor treatment vastly reduced the risks of developing many of the health problems caused by syphilis, yet after the experiment concluded, subjects were not treated, even after antibiotics became the preferred method of treatment.
The researchers tested for syphilis in the African American population of Macon County using the Wassermann test which was developed in 1908. The samples were then introduced to cardiolipin, an antigen derived from bovine muscle. If the introduction of the antigen caused a reaction, the test was read as positive, meaning that the patient had syphilis non-specific antibodies in their blood. The intensity of this reaction indicated the intensity of the infection. When the study began in 1932, researchers found that 36% of the African American population of Macon County tested positive for syphilis. All men involved in the study were denied proper treatment, which was the use of neoarsphenamine and bismuth. Through previous research, it was understood that Spirochaeta pallida, the organism that causes syphilis, enters the nervous system early into its infection. To properly treat syphilis, the medication must cross the barrier into the central nervous system where the infection resides. As a cation, bismuth does not readily penetrate the central nervous system, but as an anion, it can.
Cerebrospinal fluid contains more anions and fewer cations than blood, so anions cross into the cerebrospinal fluid in a much simpler manner than diffusible cations. In combination with iodine, bismuth acts as an antisyphilitic agent. When a solution of 6% iodobismuthite is dissolved in 12% sodium iodine and ethylene glycol then injected intramuscularly, bismuth is present enough to cross into the central nervous system without unwanted side-effects. The presence of bismuth eventually treats syphilis, but multiple injections over time are required for full treatment. The procurement of a bismuth anion is also difficult and time-consuming, so researchers of the Tuskegee study argued observation and a better understanding of the stages of syphilis infection were required for better future treatment. However, when penicillin was determined to be a more effective treatment for syphilis, the researchers still refused to provide treatment to the experimental subjects.
The Tuskegee study was not a just product of its time. In 1933, the American Heart Association, after being requested for help in understanding the changes to the aorta from syphilis, asked the Tuskegee researchers for the scientific validity of the experiment and expressed great concern over the research’s tests and procedures. While the experiment was being conducted, organizations stood against its procedures, but 75 years passed before any of the experimental subjects received an apology. After the United State’s formal apology, the National Institute of Health (NIH) expanded its support for bioethics training and research. In 2005, the United Nations formed the Universal Declaration on Bioethics and Human Rights and in 2009, President Obama created the Presidential Commission for the Study of Bioethical Issues. Despite the steps taken to prevent the United States from funding such an unethical study in its own borders, widespread distrust of medicine is pervasive in the country.
The United States must properly care for its people, and to do that, it needs to earn trust from its people. More resources must be allocated toward bettering medical facilities in underserved communities and toward promoting a trust in medicine in those communities if the country wants to stop the spread of preventable diseases.
