The Tuskegee Syphilis Study Essay

Custom Student Mr. Teacher ENG 1001-04 19 March 2017

The Tuskegee Syphilis Study

Introduction

            Last January 16, 2004, Ernest Hendon died at the age of 96. He was the last person among the 600 men who were treated as “guinea pigs” for a study conducted by the Federal Public Health service. This research’s primary purpose is to find out the effects of untreated syphilis to a group of Macon Country Black men. Unfortunately, these men were not aware that they had syphilis and that they are subjects in a study.

Upon realizing that their human rights were violated and with the help of attorney Fred Grey, they filed a lawsuit against the doctors involved in the study. As a result, the government paid each of the victim and their families a sum amounting to 10 million dollars and free medical assistance. In addition to this, former President Bill Clinton delivered a public apology to the victims aired by special live satellite feed to Tuskegee which Mr. Hendon was able to watch (NYTimes 2004).

            The Tuskegee Syphilis Study lasted for 40 years, from 1932-1972. It was conducted near the Tuskegee Institute Macon County Alabama and was an undisclosed experiment. Its target is to know the extent of which a person can live with syphilis.  However in 1972, when this story was exposed by the media, many reacted and became angry because people believed that such research violated ethical and human rights.

This is because the subjects for the study were mostly farmers who did not have formal schooling. None of them knew they had syphilis. Certain requirements were also imposed before one as accepted as a subject. The qualified person should be young and was not treated with the disease before the study was made. In exchange of such participation, they are given free medical checkups for other health concerns, food during times they visited the doctors’ clinics and funeral expenses in case a patient dies (BBC 2007).

            In the medical history, the Tuskegee Syphilis Study is considered the longest research done wherein human beings are directly used. It is also one of the most terrible studies which violated moral rules. This is why the government started to create different laws that will look and impose proper penalties if similar studies will be done in the future.

Historical Background

               In 1928, many thought of ways on how to improve the health conditions of African Americans living the southern area. This was the year when the US Public Health Service (PHS) accomplished a study involving black employees of the Delta Pine and Land Company of Mississippi.

Their report showed that 25% out of the 2000 subjects have syphilis. To help these people, a medical director from Julius Rosenwald Fund, which is a charity organization based in Chicago, coordinated with PHS and conducted medical aids for their treatment. Because of positive results, the program went across many other provinces in the South such as the Albemarle (Virginia), Glynn (Georgia), Macon (Alabama), Pitt (North Carolina) and Tipon (Tennessee) (TU).

            The partnership between the Rosenwald Fund and PHS did not last long. When the US economy experienced a great slump and almost all agencies were having difficult time earning money, the Rosenwald Fund pulled out its participation in the program (TU). But still, the PHS continued its research only this time, with the Tuskegee Institute. In 1932, these two organizations pursued a study in Macon Alabama involving the effect of untreated syphilis in Negro males (CDC 2008). The plan was to observe what will happen to syphilis patients in six to eight weeks if no medical assistance was administered (BBC 2007).

            The Tuskegee Institute was well known because of its many successful aids to African American people. Because of their involvement to the study, financial support was given for the institution’s development such as trainings for the interns and nurses (TU).

From eight weeks, the Tuskegee study lengthened to 6 months and then eventually continued for 40 years (CDC 2008). As earlier described, the study was done to 600 black men, 399 with syphilis and 201 without it. The researchers literally gave “false” information to the subjects since they were made to believe that they are being given medical aids for anemia and fatigue (locally known as bad blood). In turn, the “guinea pigs” were provided with free checkups, food and funeral indemnity (CDC 2008).

            Another focus in this study was to prove if heart problems were more prone to Black people with untreated syphilis and untreated white people to problems in the nervous system.  Such purpose was not divulged to the subjects. The poor economic conditions of the men living in this area were one of the reasons why they were chosen to be the subjects. All of them were not even able to attend school. The attraction of free medical assistance aroused their interests and make them participate in the study, PHS doctors encouraged them by disseminating “white lies” incorporated with a banner entitled “Last Chance for Special Free Treatment” paved way for their constant visitations to the clinics.

However, the medical treatments given to them were not in any way for their disease. If ever check-ups are done and initial remedy is not enough to completely cure syphilis. At first, all the subjects were given small doses of which a mere 3% showed health development. Afterwards, syphilis medications were substituted with aspirin. Such move and antics did not affect the underlying research (Brunner 2007).

To keep the research going, PHS physicians ordered their agencies not to supply medicines to the patients under study. Although in 1943, PHS distributed penicillin to other people but specifically not to the subjects of the study. Even if the participants left the province, their activities were continuously monitored by local health agencies not letting these poor black men receive appropriate medications until after 1970s which is the target year for the end of the research (TU).

            Finally, a light at the end of the tunnel opened. Not all who are involved in doing the study agreed to how and why it was done. In 1966, PHS’ Venereal Disease Investigator and Interviewer Peter Buxton started the protest within PHS opposing the study. However, it still continued even if many newspapers exposed the research (TU). In his eagerness to stop the research, Buxton divulged the whole story to Reporter Jean Heller of the Associated Press which the later first wrote about on July 25, 1972 (McCallum, et.al. 2006).

It garnered reactions from other people. One is from news anchor Harry Reasoner wherein he mentioned that the study likened humans to “guinea pigs” (Brunner 2007).  The Tuskegee Syphilis Study spread like fire in the African American community (McCallum, et. al. 2006). Media also associated this study to the Nazi Doctors dreadful research on the Jews in WWII (Brunner 2007).

            Upon news expose’, PHS defended the reasons and objectives of the study. They made excuses such as that they are only following what was directed for them to accomplish and that the results were for the advancement of Science particularly in the medical field. However, the results from the Tuskegee Syphilis study were not substantial in terms of improving treatments of such disease. A person from PHS even confirmed that the study did not provide any clear remedy or even prevent syphilis from spreading from one person to another.

It failed to achieve its initial objective of managing such disease in the US (Brunner 2007).  The minimal information it gave does not equate to the lives of the patients who were put at risk. Men who were not given any special medical attention from the start are already a clear indication of a violation in the scientific code of rules. Because of the study’s questionable procedures, the Assistant Secretary for Health and Scientific Affairs ordered that the Tuskegee study stopped (CDC).

Analysis

            Today, the Tuskegee Study greatly affected the African American Community. It created a stigma against such cultural group. As a result, they no longer trust the Public Health’s programs. This study is still classified as the worst research ever done because it did not respect the moral rules and human dignity. It also did not follow the standard set by the scientific community when it comes to conducting experiments (HSL 2002).

            Such morality issues came from Ad Hoc advisory panel which was created upon the recommendation of the Assistant Secretary for Health and Scientific Affairs. This panel consists of 9 members, representing different groups from law, medical, religion education, labor and public affairs.

Upon their review of the actual setting of the experiment, 4 conclusions were drawn: First, the subjects were not forced to be included in the study. Second, the participants were not informed of the true aim of the research. Third, even if penicillin was available, it was not administered to the subjects. Lastly, the participants were not given the option to discontinue from the research. The study was then considered as unjustifiable (CDC).

                Many people also suffered as a grieve consequence from the study. Results show that among the 600 men who participated, 28 died of syphilis, 100 from other health concerns, 40 wives were infected and 19 children had this disease imprinted in their genes (BBC 2007).

            Such study also prompted the government to create the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. This also led to the genesis of the first Bioethics Center of the Tuskegee University after President Clinton confessed to the Tuskegee Syphilis Study survivors. The Commission’s goal is to make certain guidelines when conducting studies that will involve live human patients. This includes the formulation of the patient’s rights to approve if he/she wants to be a part of the study. He/she should be aware of the objective even before the research is conducted (BBC 2007).

Effects to the families

            The Tuskegee Study has garnered great attention and criticisms in all aspects of society. After 25 years, America was awakened with such a horrific act of science malpractice. Even the former President was struck with the reality of the abuse done within the study. It has been a constant subject for discussion and commentaries in the academe, news and books. Not only that, the showbiz arena also made it a theme in the movies and plays. However, it was the victims’ families who carried the burden of embarrassment left by their paternal diseases.

There is no specific information that will directly tell the whereabouts of the families. The Federal Government has been secretly doing humanitarian acts such as free medical treatments to persons infected with the disease. In fact, some 22 women, 17 children and 2 grandchildren who had untreated syphilis were given lifetime free medical assistance which stated in 1972 (Yoon 1997).  This is probably due to the fact that they are recognizing their faults in the past and making up for things that were done to the Tuskegee people.

                The enormous emotional effects to the victim’s families in the Tuskegee Study were not seen immediately most especially to the children at that time. It manifested when the children matured and eventually understood the whole scenario including the dilemma of being branded by the society. As adults, the trauma it left affected their dealings with other people.

An example of this is a 55-year-old son of a participant, Albert Julkes Jr. While recalling his painful experiences, he described their situation as the most terrible act that the government has done to people. They were treated like person with communicable diseases and were ostracized by the public. They were subjects of scrutiny in the eyes of other people. He even described the kind of torment his father experienced. Although, Albert Julkes Jr. became a successful supervisor from a gas and electric company, being treated as worst than a dog is a nightmare that continuously haunts him up to this day (Yoon 1997).

            Aside from sadness and depression, some families also feel a burning anger within them. A granddaughter of one participant Freddie Lee Tyson is still furious of what happened to her grandfather. Carmen Head, 22, shared that her family did not disclose much information regarding his grandfather’s participation in the study. It left a deep wound to the family that could not be healed. The topic regarding the father’s involvement was not allowed during the family’s discussion. Carmen’s mother, Mrs. Head, wasn’t even sure if his father was among those 400 infected individuals or the 200 men who were not.

All they knew was he was part of it and it was not something to brag about.  Mrs. Head is now serving as a Health Education High School teacher (Yoon 1997). Martha Jernigan, 49 years old and a housewife, is another furious individual adding that treatments given to the Black people will always be the same. They will always be regarded low class citizens. She had two cousins who subjected themselves in the research. She recalled that since people then were uneducated, they are thought of as dull and brainless individuals which can be manipulated by other superior individuals (Yoon 1997).

            A person who lived on to tell the tale recalls how hard it is to go on with his life carrying a disease. Herman Shaw, 94 and is still a Tuskegee resident, relived the days when they were under the hypnotism of the promised benefits from the distorted medical research. He shared the painful scenario of his wife flabbergasted upon knowing the true objective of the research. Worst, her husband was a part of it. His sadness emanates while he was telling the story with the picture of his wife clasped in between his fingers and is reflected in his eyes (Yoon 1997).

            Feelings of disappointments, doubts, fury and embarrassments by the affected families are all natural responses. Such feelings eventually led to a doubtful race. These circumstances are the reasons why those who availed the Participants Health Benefit Program had a low turnout. Dr. Vanessa Northington Gamble, a person expert in medical history and the director for the Center of Race and Ethnicity in Medicine at the University of Wisconsin said that the emotional trauma created by the study has a great influence on the reaction of the affected individuals together with their families.

On the onset of the Benefit program in 1974, 106 men availed and obtained their benefits. In contrasts, very few of the wives claimed such assistance. The following year, 50 females subjected and have been checked for possible syphilis infection. Twenty seven (27) of them were infected and thus were entitled to the program (Yoon 1997).

            Other people also had a humane attitude of helping the Tuskegee men. Most of them succeeded while some failed to fight for the cause of the participants. However, their move created a noise that eventually was not put in vain. Dr. Bill Jenkins was one of them. He was a former statistician in the National Center for Health Statistics in Washington when he came across the issue of the Tuskegee Syphilis study. He thought that these men does not deserve to be given such treatment but must be given appropriate medical remedy.

His voice was not heard. At present, he is a part of the Government’s program for the families serving as an epidemiologist. As much as he could, he wants to exhaust his efforts into helping the men and eligible family members to achieve the fullest extent of care and services. This program is called the Tuskegee Health Program tasked help the families and relatives of the men involved in the research. In 1996, the government has already spent 2.1 million dollars primarily for medical assistance to the families (Yoon 1997).

Government’s Move

            When the research was ended in 1972, the government started providing medical assistance to the syphilis victims. Adding to this, Atty. Fred Gray filed a 10 million law suit for the men and their families (Brunner 1997). In 1974, a settlement decision was made in favor of the victims. Inclusive of the 10 million dollars that the government must pay, they should also provide lifetime medical health insurance and burial provision for those are still alive. Thus the Tuskegee Health Benefit Program was established.

Since then, it has been offering services for the wives and children of the victim. As the program develops, the extent of the services was broadened and few programs were initiated. Examples of such are Center for Disease Control and Prevention which further created different sub-agencies. The sub-agencies are the HIV/AIDS, Viral Hepatitis, STD and TB Prevention (CDC). To date, they are consistently monitoring and giving proper medical attention to different people (Yoon 1997).

            Since the story has gone out in the open, a Committee tried to pacify the situation by addressing the issue publicly. In January 1996, they met with President Clinton and convinced him to express regret to the victims because of the Tuskegee Study. Thus on May 16, 1997, President Clinton was heard by the entire nation saying:

“To the survivors, to the wives and family members, the children and grandchildren, I say what you know: No power on Earth can give back the lives lost, the pain suffered, the years of internal torment and anguish. What was done cannot be undone. We can look at you in the eye and finally say, on behalf of the American people: what the United States government did was shameful. And I am sorry” (NPR 2002).

The president’s admission and apology ended the horrible part in the web of the American Public Health. However, the effects are very well remembered by the racial group concerned as well as in the field of medicine. Despite of what the government has done, the group still feels the shame and torment that has been not only to them but also to their entire generation. The public will always have a bad impression to them. This is why part of the government’s initiative is to put up a Legacy Committee to specifically compile some preserved data of the Tuskegee Syphilis Study. It will make people constantly aware of what happened and will eventually lead to a greater understanding of its impacts to the families (HSL 2002).

Conclusion

            In the course of the Tuskegee Syphilis study, a lot of issues emerged. One is racial discrimination. Since the beginning, many white men taught they are superior to their black counterparts. They always taught that they had dominion over the land and that Blacks have no place in it simply because they are uneducated and poor. Such notion was thought to be the surrounding idea of white government officials, scientists and even doctors who were involved in the study. Throughout the history of medical research, few Black people are engaged in the study making them only as subjects instead of being a part of a Research team.

They have been taken advantage of and their capabilities were not used. On the other hand, many Black people easily get intimidated with their white counterparts simply because they degrade themselves knowing that their descent originated from slaves. The attitude of being low second class citizens in the United States makes them timid and become content of what they have and know. In the case of the Tuskegee participants, they were easily lured by promises of better health and tastier food which they cannot provide for themselves. They fully relied on other people which they think would give them a healthier disposition.

Moreover, the question on racial discrimination was further raised when Eunice Rivers, a black woman, supported the Tuskegee study. She was a nurse and is greatly involved in the study. Part of her work was to drive the men participants to the clinic with her own car. She also consistently visits the participants and interviews them regarding their status. For Rivers the Tuskegee study was a good scientific study and that many will benefit from its results. The medical care and attention that was continuously administered to the patients helped in curing them. The attitude that Rivers displayed during the study puzzled the minds of many people.

            Another bothering issue is the abuse and unethical act done by the people who were supposed to save lives, the doctors. They are expected to administer treatment to patients yet in the study, they were the ones who blocked the remedy for syphilis. Worse, they interwove lies upon lies and false stories with regard to the total condition of the patient. They did not respect the oath they swore into the moment they received their license. They were also using live human beings in carrying out their study. Such acts should not be accepted in the industry which aims to provide the opposite.

The abuse of position and capabilities were seen in the doctors and well as in the Public Health Agency. They used their positions, coupled with the illiteracy of the people, to continue on a study. Where they really interested in pursuing the understanding of the disease?  Or an underlying purpose hides the real intentions? Nothing was said about the penalties imposed to the doctors and scientists who participated in the study. They should be given the highest degree of disciplinary action since they violated the first rule of their profession.

            At one point in the history, the Tuskegee Syphilis Study was thought of something that is not true. Some say that it is very impossible for the Surgeon General of the United States to allow a group of people to administer such an experiment in which lives of many people will be at stake. However it did happen and up to this time many African American people no longer believe the US government specifically the Public Health Services.

As a result, if ever there are further studies to be conducted, even if it is related to more serious health concerns, such group will no longer involve themselves for fear that it will be another “Tuskegee Study”. Regaining back the trust is probably one of the hardest things to do. It should start from somewhere. The government must find ways on how to do it and former President Clinton’s public apology might be a start of it.                     

References:

BBC. (2007). The Tuskegee Experiment. Retrieved July 9, 2008 from  http://www.bbc.co.uk/dna/h2g2/A29255033

Brunner, Borgna. (2007). The Tuskegee Syphilis Experiment. Retrieved July 9, 2008 from http://www.infoplease.com/spot/bhmtuskegee1.html

Centers for Diseases Control & Prevention. (2008). U.S. Public Health Service Syphilis Study at Tuskegee. Retrieved July 9, 2008 from http://www.cdc.gov/tuskegee/timeline.htm

Health Science Library. (2002). Bad Blood: The Tuskegee Syphilis Study. Retrieved July 9, 2008 from http://www.hsl.virginia.edu/historical/medical_history/bad_blood

McCallum, Jan M., Arekere, Dhananjaya M, Green, B Lee, Katz, Ralph V. and  Rivers, Brian M. (2006). Awareness and Knowledge of the U.S. Public Health Service

Syphilis Study at Tuskegee: Implications for Biomedical Research. National Institutes of Health. Pp 2-3

National Public Radio. (2002). Remembering Tuskegee. Retrieved July 9, 2008 from http://www.npr.org/programs/morning/features/2002/jul/tuskegee/

NY Times. (2004). Ernest Hendon; Tuskegee Study Participant, 96. Retrieved July 8, 2008 from http://query.nytimes.com/gst/fullpage.html?res=9C00E4DF1539F933A15752C0A9629C8B63&scp=2&sq=Tuskegee+Syphilis+Study+&st=nyt

Tuskegee University. Research Ethics: The Tuskegee Syphilis Study. Retrieved July 9, 2008 from http://www.tuskegee.edu/Global/Story.asp?s=1207598

Yoon, Carol Kaesuk (1997). Families Emerge as Silent Victims Of Tuskegee Syphilis Experiment.  Retrieved July 10, 2008 from

http://query.nytimes.com/gst/fullpage.html?res=9D0DE5D91039F931A25756C0A961958260&scp=1&sq=Tuskegee+Syphilis+Study+&st=nyt

 

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