Syphilis is known to be a deadly sexually transmitted disease if left untreated (Center for Disease Control and Protection [CDC], 2014). This disease can affect men, women, and children alike, but is treatable if discovered in its early stages (CDC, 2014; Medline Plus [MP], 2014). The Tuskegee Study for Untreated Syphilis of 1932 was a medical research study that devastated the lives of many African American men, as well as having direct (and indirect) negative impacts on the lives of their wives and children (Gray, 1998). Gray discusses the 40-year race-based medical experiment, occurring in Tuskegee, Alabama, aimed at examining how second-stage/latent syphilis affects African-American men versus how it affects Caucasian men. The 400 African American men infected with syphilis were told they had “bad blood” and were manipulated into allowing medical doctors, funded by the government, to perform painful experiments on them. The men were unethically never given the opportunity to receive proper treatment for their syphilis (even after penicillin was discovered to be the treatment of choice) and most of the gentlemen perished during the course of the study. However, not before the disease unfortunately inadvertently affected their loved ones. Ultimately, a lawsuit was filed against the medical providers and the federal government for their participation in this unethical research experiment that ended in 1972, and a settlement was reached awarding the survivors and their families over $10 million dollars (Gray, 1998).
This paper highlights syphilis, the Tuskegee Syphilis experiment, and how it affected and devastated the lives of the 400 African American men and their families. It also discuss the many ethical principles that were violated during this study and the laws that have been inspired and enacted as a result of this travesty of a study.
According to Walker C.A, 2009, the Tuskegee Experiment was conducted in 1932 by the U.S. government and the public health department of Alabama in Macon County, Alabama. Only Black men (Negros at the time) were recruited as subjects in the study. The research participants were sick, poor, uneducated (illiterate) and mislead to participate in the study with the promise of receiving hot food, transportation to town, medical care and $50 in burial insurance. The reason for the study was to investigate the effects of untreated syphilis in infected males. Test subjects that participated in the study included 399 black men. An additional 200 uninfected men were later enrolled in the study as a control group. According to Smolin (2012), funds from the Rosenwald fund were created to assist the Public Health Service in the treatment of sexually transmitted diseases before the Tuskegee experiment commenced. As a result of the high rate of syphilis infection and lack of treatment, especially in Macon County Alabama, the number of infected individuals (male) was high and proved fertile ground for the conduction of a study on mass treatment. The Tuskegee experiment was originally intended to last for six to eight months and the researchers aimed to know if available treatment was beneficial or harmful to the patients. State health officers promised treatment to the patients infected with syphilis. They also claimed to intend for this study to create awareness in a county infected with syphilis but lacking funding to treat the patients.
However, it was later proven that “a fundamental ethical problem of the outset was the decision to mislead the treatment subject and wider community (Smolin, 2012). At the time of this study in much of the research that was conducted, the subjects were not given the truthful information about what they were going to be subjected to. “There are at least three more critical moments of decision that made the Tuskegee experiments into such an infamous example of unethical human experimentation” (Smolin, 2012). The first thing that happened was that the study was extended without duly informing the participants. Secondly, “researchers” deliberately watched the negative effects of syphilis on untreated men and mislead the patients into believing that they were receiving actually treatment. In some literature it is reported that the Public Health Service intentionally withheld intervention and medical treatment under the guise that they lacked funding for the treatment of patients (Smolin, 2012). The research study continued beyond expected time initially told to the participants. Even after World War II, when penicillin became the known drug of choice was used successfully for the treatment of patients infected with syphilis, it was not made available or used for treating participants of Tuskegee experiment (Walker, 2009).
In a perceptive post-study review conducted by The Hastings Center, “an independent, nonpartisan, and nonprofit bioethics research institute founded in 1969,” more insight is given into the thoughts and “rationales” of the researchers which led to the initial inception of the Tuskegee Experiment. Author of the review, Allan M. Brandt (1978), offers a glimpse into the corrupt and immoral mindsets of the doctors and investigators of the U.S. Public Health Service (USPHS) that allowed this unethical research to go forth. The Hastings Center Report published in December 1978, about six years after the conclusion of the Tuskegee Syphilis Study, contends that from the outset of the study, ethical and moral principles of the researchers were in question.
The study was conducted at a time in history when racism in America was commonplace and widely accepted as the social norm. Negroes or Blacks were considerably seen as a lower class of people. Many people of that time considered the Negro a “primitive peoples [that] could not be assimilated into a complex, white civilization” ((Brandt, 1978, p. 21, para. 3). Researchers and medical professional made an argument that based on scientific physical findings “a careful inspection reveals the body of the negro a mass of minor defects and imperfections from the crown of the head to the soles of the feet....Cranial structures, wide nasal apertures, receding chins, projecting jaws, all aped the Negro as the lowest species in the Darwinian hierarchy” (Brandt, 1978, p. 21, para. 4). Prevailing thoughts of inferiority and blatant disregard for Blacks as a part of the human race made it possible for an unethical experiment such as the one in Macon County, Alabama to occur.
The Hastings Center Report further goes on to report numerous communications from study officials to various individuals that support the unethical nature of the research and its violation of moral principles throughout the forty year undertaking of the Tuskegee Syphilis study. From its onset in 1932 when Public Health Service official Dr. Taliaferro Clark considered Macon County and its high incidence of untreated black syphilitic males to be a “ready-made situation,” the Tuskegee Study abused and neglected the rights of its participants and ethical principles of self- determination, informed consent, maleficence, beneficence and justice (Brandt, 1978, p. 22, para 6). The Tuskegee Syphilis Study, now an infamous part of American history, has done much to change the way research is conducted on human test subjects. As will later be discussed, ethical guidelines in research and institutional oversight have since been developed as a result of the atrocities inflicted on the men in The Experiment and subsequently on their families and communities as well as on the ability to conduct future scientific research in the Black community, where there is a degree of mistrust of the medical research community.
According to Poythress et al. (2011) there has been a great impact on people not wanting to participate research studies due to the findings of the Tuskegee experiment which make many believe that they may not be fully informed about the research they are being recruited for. There is a tremendous lack of trust in researchers. Unfortunately, many people still hold on to the fact that “the Tuskegee study is known to be the most famous example of biomedical research subject abuse in U.S. history” (Poythress et al., 2011).
Exploration and Analysis
The Tuskegee Study is one of most unethical and nontherapeutic studies ever conducted. Many of the unethical issues endangered and eventually killed many of its research participants, and infected unknowing wives and unborn babies. The infamous Tuskegee study was forty years of abuse and unethical concerns such as lack of informed consent, lack of confidentiality and privacy, deceitful disclosure of results, not protecting vulnerable participants, withholding treatment for research purposes, lack of autonomy, and lack of accountability and adhering to research protocol.
Obtaining informed consent is one of the biggest unethical issues of this study, yet the 400 black men of Macon County, Alabama were not informed that they had syphilis. The participants were promised free treatments, which included painful spinal taps that were performed without anesthesia and given nontherapeutic medication in the treatment of their syphilis. According to Beauchamp & Childress (2013), The Tuskegee Study used manipulation to sustain the participants’ interest in the study. Burial assistance was offered to these poor African American men who had no resources and did not want to burden their wives and children with expenses after they were dead. Researchers also manipulated subjects by offering them free transportation to and from medical visits because they were aware that most of the participants were too poor to own vehicles. Participants were given free hot meals on the day of doctor’s visits and free medications. However, penicillin was not one of the treatments offered, even once it was known to the medical community that penicillin was a suitable therapy option. (Beauchamp & Childress, 2013). These men all came from a poor deprived socio-economic backgrounds and did not fully understand what they were agreeing to and may have felt coerced by the researchers. Their only contacts were the authority figures such as the doctors and nurses of the research study who were not acting in the participants best interests.
Unethically, the USPHS withheld treatment (penicillin) for the purpose of research once it became available to the general public. The Tuskegee study began in 1932 before penicillin became available in the 1940s. Researchers justified not giving the participants treatment because they stated there was no research available for what the effects would be on someone in latent stages of syphilis. Even in the early 1950s when penicillin became the standard for syphilis treatment, it was still withheld. The research participants were never given the choice to stop the study and receive the penicillin treatment in fact they were prevented from getting the penicillin treatment by means of what would now be considered modern day “black-listing” (Beauchamp & Childress, 2013).
The Tuskegee Study was dishonest and broke state and moral laws from its inception. In 1927 a law was passed that required all venereal diseases and treatments be reported; however, the USPHS ignored this state law (Beauchamp & Childress, 2013). The disregard for the law eventually affected and infected the wives and unborn children of the participants. Moreover, researchers did not accurately keep accurate documentation during the study. For nearly 40 years, doctors and researchers continued to publish papers in medical journals without questions from the medical world about ethics or morality. No one questioned any of the scientific values, any of the treatment or lack of treatment for the men in the study. This study did not produce data or research that benefited anyone, especially the black men in Macon County, Alabama. It has been concluded over time that there was no perceived benefit to his study that can be generalized to the public. The study didn’t change how we treat syphilis, how men or their families live with it. This study did not answer any questions related to syphilis. The Tuskegee Study did however, change the way research is viewed in certain communities.
The mistrust of the government and the medical profession that has ensued since the conclusion of the Tuskegee Study has hurt the African American communities. Many African Americans are affected by high blood pressure, diabetes, obesity and other health conditions, yet these health disparities are underrepresented in research because African Americans are fearful of what has taken place in the past. Newer laws and regulations have been established to help with these issues.
In 1974 the National Research Act, the Common Rule, was passed which mandates that IRBs or institutional review boards be established at all facilities that receive federal research dollars. IRBs review research protocols before research can begin to ensure that the rights and well- being of all humans subjects are protected. The IRBs makes sure that researchers obtain informed consent properly and legally, and that the risks to the participants are minimal and that the participant’s selection is equitable. The IRB must include at least one member who is not affiliated with the facility and a total of at least five members.
In 1993 the NIH Revitalization Act was developed to mandate the inclusion of women and minorities in research but has had very limited success. This government policy was supposed to increase the representation of women and minorities in research. In 2011 the US Department of Health and Human Services was unsuccessful yet again in establishing another version of the policy called the 2011 Advanced Notice of Proposed Rule Making which was also to address the underrepresentation of African Americans and other minorities.
The Tuskegee Experimental Study has brought major change in the way medical and other research is conducted, how participants are recruited and how informed consent is obtained. There have been the creation of the aforementioned laws as well as the establishment of a center for Bioethics and institutional review boards (IRBs) at facilities receiving federal funding to conduct research. These laws and review boards help to protect and insure the public that nothing akin to the events at Tuskegee can ever happen again in history.
Brandt, A. M. (1978). Racism and research: The case of the Tuskegee Syphilis study. Retrieved from The Hastings Center: http://www.med.navy.mil/bumed/Documents/Healthcare%20Ethics/Racism-And-Research.pdf
Center for Disease Control and Prevention. (2014). Syphilis- CDC fact sheet. [Online]. Retrieved from http://www.cdc.gov/std/syphilis/STDFact-Syphilis.htm
Gray, Fred. (1998). The Tuskegee syphilis study. Montgomery: New South Books. Retrieved from http://www.history.ucsb.edu/faculty/marcuse/classes/33d/projects/medicine/The%20Tuskegee%20Syphilis%20Study.htm
Medline Plus. (2014). Syphilis. [Online]. Retrieved from http://www.nlm.nih.gov/medlineplus/ency/article/000861.htm
Poythress, N., Epstein, M., Stiles, P. & Edens, J. F. (2011). Awareness of the Tuskegee syphilis study: Impact on offenders' decisions to decline research participation. Behavioral Sciences & The Law. 29(6), 821-828. doi:10.1002/bsl.1012.
Smolin, D. M. (2012). The Tuskegee syphilis experiment: Social change, and the future of bioethics. Faulkner Law Review, 3(2), 229-251.
Walker, C. A. (2009,). Lest we forget: The Tuskegee Experiment. Journal of Theory Construction & Testing. pp. 5-6.