INTRODUCTION
A whole lot of literature published in journals and books identifies the “Tuskegee Syphilis Study” as an infamous research, in which the uneducated Afro-American males in the US were denied treatment for syphilis and deceived by the US Public Health Services’ officials. This study was the longest and a harsh experiment on humans in the history of medicine.
This study was a clinical research carried out in the poorest counties of the state of Alabama, US between 1932 and 1972 on around 600 black men of which about 399 were infected with syphilis. The balance 201 men served as the control group.1 This study, which continued for 40 years, was carried out by the United States Public Health Service (PHS) to trace the ‘natural history’ of syphilis.2 The aim of the study was to see whether blacks (African – American) reacted to the disease in the same way as whites did, and to see for how long a person with syphilis can live if he is not given a treatment.1 The public health services officials periodically conducted physical examinations, blood tests, and finally autopsies on all the study participants. There was no treatment offered to the 399 patients suffering from syphilis and they were also discouraged to treat themselves elsewhere.2
BACKGROUND, METHOD, AND APPROACH
There was widespread incidence of syphilis among rural blacks. Concerned with this, the PHS officials began offering treatment after receiving funding from a private philanthropy.
- Adebayo Ogungbure. “The Tuskegee Syphilis Study: Some Ethical Reflections.” Thought and Practice: A Journal of the Philosophical Association of Kenya, 2011, 2 (2), pp75-92.
- Martha Soloman . “THE RHETORIC OF DEHUMANIZATION An Analysis of Medical Reports of the Tuskegee Syphilis Project.” In Reverby, S. (Ed.) Tuskgee’s truths: Rethinking the Tuskgee syphilis study, Chapel Hill: University of North Carolina Press, 2000, pp. 251-265. http://www.brown.uk.com/teaching/HEST5001/solomon.pdf.
Unfortunately, after sometime, the private funding ceased, but by this time it was discovered that many blacks suffered from syphilis. This is where the ‘Tuskegee Syphilis study’ was born.3 This was an opportunity for the PHS officials to study the effect of untreated syphilis. Many had not received treatment and therefore considered ‘pristine’, and secondly, the victims were blacks. There was a controversy earlier that syphilis affects blacks differently than whites.2 This study just provided an opportunity to explore this controversy. Such non-therapeutic studies, which deny treatment to an individual patient are usually justified on the basis that they provide information to help enlarge medical knowledge database. Since they yield valuable information, they can be condoned morally because they benefit a larger group even though not the suffering individual.2
The PHS officials did not offer any treatment to the victims; they supported the decision not to offer penicillin even though it was available at that time, on the grounds that a major damage has already occurred and that the impact of penicillin drug might be more harmful.4
Many studies were published through the study period of 40 years. The disease is depicted as an agent that destroys the ‘host’ – human, through its effects on the cardiovascular (CVS) and the central nervous system (CNS). It disables the victim through impairment of these systems.2
According to Vonderlehr et al, involvement of the CVS and CNS were two to three times more
2. Martha Soloman. “THE RHETORIC OF DEHUMANIZATION An Analysis of Medical Reports of the Tuskegee Syphilis Project.” In Reverby, S. (Ed.) Tuskgee’s truths: Rethinking the Tuskgee syphilis study, Chapel Hill: University of North Carolina Press, 2000, pp. 251-265. http://www.brown.uk.com/teaching/HEST5001/solomon.pdf.
3. James Jones. “Bad Blood: The Tuskegee Syphilis Experiment”. New York: Free Press, 1981.
4. Agulanna, Christopher. “The Requirement of Informed Consent in Research Ethics: Procedure for Implementing a Crucial Ethical Norm in African Communal Culture”. European Journal of Scientific Research, 2010.Vol.44 No.2, pp.204-219.
common in untreated syphilis group as compared to that group receiving an inadequate treatment. The disease ultimately results in death; therefore, there is increased morbidity among the untreated victims. The study showed that the victims in the Tuskegee study are ‘the kind of victims who offer an unusual opportunity to study the untreated syphilitic patient from the beginning of the disease till the death of the infected person.5 According to Heller and Bruyere, the life expectancy of a black syphilis patient aged between twenty five to thirty five years who received no treatment for his infection was on the average reduced by about 20 percent.6 Peter et al’ study describes the impact of disease from its pathological signs. This study has drawn its details from autopsies.7 However, Soloman wants to point out that none of the studies have focused on the emotional aspects of the victim who was denied treatment.2
In 1981, James Jones, in his detailed study, “Bad Blood: The Tuskegee Syphilis Experiment” has traced the history of the project and examined the rationale provided by PHS officials. His thorough analysis that he has highlighted in his book clearly only indicates the role of racial bias, disordered and disorganized medical thinking, and administrative dynamics in instigating a passive observation of the disturbing effects of the disease on humans.3 However, his analysis failed to explore very significant questions - ‘Why the progress reports that appeared
- Martha Soloman. “THE RHETORIC OF DEHUMANIZATION An Analysis of Medical Reports of the Tuskegee Syphilis Project.” In Reverby, S. (Ed.) Tuskgee’s truths: Rethinking the Tuskgee syphilis study, Chapel Hill: University of North Carolina Press, 2000, pp. 251-265. http://www.brown.uk.com/teaching/HEST5001/solomon.pdf.
- James Iones. “Bad Blood: The Tuskegee Syphilis Experiment”. New York: Free Press, 1981.
5. RA Vonderlehr., Taliaferro Clark, Wegner O. C., Helier,J. R., Untreated Syphilis in the Male Negro. Venereal Disease Information, 17 (1936): 260-65.
6. JR HelIer, and Bruyere. "Untreated Syphilis in the Male Negro: Mortality During 12 Years of Observation, Journal of Venereal Disease Information, 27 (1946): 34-38.
7. Peters, Iesse J., Iarnes H. Peters, Sidney Olansky, and Geraldine A. Gleeson. "Untreated Syphilis ill the Male Negro: Pathologic Findings in Syphilitic and Nonsyphilitic Patients." Journal of Chronic DIsease 1 (1955): 127-48.
in major medical journals between the period from 1936 to 1973 did not outrage the medical community?’ Why was there no criticism from the medical community?2 This is one thing that is particularly striking.
Very recently published Ogungbure’s paper has highlighted a critical examination of the Tuskegee syphilis project, and brought to notice of the world the unethical procedures employed by the PHS officials. Ogungbure’s paper shows that some syphilis victim participants of the study suffered a range of adverse events ranging from paralysis of the limbs to extreme neuronal damage. Paralysis of the limbs was due to a very risky spinal tap procedure, which was used by researchers of the study to collect fluid from the spinal cord of the patient for examination. This was done without the use of anesthesia. Some victims died of advanced syphilitic lesions. Some victim’s wives were infected, while some children were born with congenital syphilis. In any
- Adebayo Ogungbure. “The Tuskegee Syphilis Study: Some Ethical Reflections.” Thought and Practice: A Journal of the Philosophical Association of Kenya, 2011, 2 (2), pp75-92.
- Martha Soloman. “THE RHETORIC OF DEHUMANIZATION An Analysis of Medical Reports of the Tuskegee Syphilis Project.” In Reverby, S. (Ed.) Tuskgee’s truths: Rethinking the Tuskgee syphilis study, Chapel Hill: University of North Carolina Press, 2000, pp. 251-265. http://www.brown.uk.com/teaching/HEST5001/solomon.pdf.
The project is now a history and there is nothing that can be done against the damage that has already been done. From all of the observations, it is well known that standards for ethical research were not followed by the PHS officials involved in the project. It raises a lot of ethical issues particularly, informed consent, racism, unfair subject selection, truth-telling, maleficence, justice, and paternalism etc.1 The study was organized and managed from the Washington, but the study participants dealt with a black nurse at the study site named Eunice Rivers, who offered help to the participants in visiting the clinics, free meals, and lastly, even burials. The study continued for 40 years until in 1972, a former PHS sexually transmitted disease (STD)
1. Adebayo Ogungbure. “The Tuskegee Syphilis Study: Some Ethical Reflections.” Thought and Practice: A Journal of the Philosophical Association of Kenya, 2011, 2 (2), pp75-92.
4. Agulanna, Christopher. “The Requirement of Informed Consent in Research Ethics: Procedure for Implementing a Crucial Ethical Norm in African Communal Culture”. European Journal of Scientific Research, 2010.Vol.44 No.2, pp.204-219.
8. Allan Brandt. “Racism and Research: The Case of the Tuskegee Syphilis Study”. Hasting Centre Magazine, December, 1978, pp.1-13.
investigator, named Peter Buxtun shared the truth about the study's unethical methods with an Associated Press reporter, Jean Heller. When it came to light, a civil rights attorney, Fred Gray, filed a $1.8 billion class action lawsuit that resulted in a $10 million out-of-court settlement for the victims, their families and their successors.9 There were congressional hearings in 1973 that led to a legislation strengthening guidelines to protect humans who are participants of research. The research was thought to be a very unethical research; and in 1997 President Clinton apologized for it using the words ‘deeply, profoundly, and morally wrong.10 Further, in 1979, the legislation published certain Ethical Guidelines and Principles for the Protection of Human Subjects of Research. These were referred to as “The Belmont Report”, which presented a well-developed ethical structure for the investigation of the matter associated with the use of humans as subjects of research. This document proved to be greatly influential. It listed and discussed several ethical principles essential for protecting human study participants from unethical treatment by the hands of investigating researchers. The first principle is respect for the study subjects, in that the researchers must respect the individual’s independence to make informed decisions based on truthful and right information on the procedures and risks of the study. The second principle is that of beneficence that includes maximizing the benefits to risk ratio for the study participant. The third and final ethical principle is justice, that ensures the cost to benefit ratio is fairly distributed among the general population, and that no one section bears an irrational burden with respect to the ratio.11
- Stephen Thomas. “The Legacy of Tuskegee” The Body: The Complete HIV/AIDS Resource. 2000, http://www.thebody.com/content/art30946.html
- Bill Clinton. “Remarks by the President in Apology for the Study Done in Tuskegee”. The Centre for Disease Control and Prevention. 1997, http://www.cdc.gov/tuskegee/cldintonnp.htm
- James Marcum. “Philosophy of Medicine.” Internet Encyclopedia of Philosophy. 2012, http://www.iep.utm.edu/medicine/;
According to Ogungbure, the Tuskegee project was an example of a research conducted without any respect or regard for any of the ethical principles and ideals enshrined in both the Helsinki declaration and the Nuremberg Code. Human beings (rural uneducated blacks) were used as guinea pigs in a risky and scientifically invalid research. It was just purely racist and unethical in every respect.1 At a time when this study was initiated in 1932, there were no guidelines to influence the design of prospective study of patients with untreated chronic disease, but in 1946, the American Medical Association (AMA) issued a report on ethics of research involving human subjects; even then the PHS officials working on the Tuskegee study took no action to modify the study or terminate it.1
The need for medical/ healthcare professionals, primarily doctors, to carry out their duties towards their patients in an ethical manner has been stressed since the ancient times; right from the time the Hippocratic Oath has been formulated. The oath was originally written by Pythagoreans and even though several parts of the oath have been reformulated over the years to suit the changing needs of medicine, the ethical drive for which it was initially expressed has been retained. The Tuskegee Syphilis study has left several questions unanswered. Did the researchers forget the Hippocratic Oath? Did they maintain ethical percepts in dealing with human beings whose wellbeing, they are actually supposed to promote?1
In recent times, bioethics is a field that has emerged rapidly as a particular moral initiative against the background of the revival of applied ethics. Medical ethics is a sub discipline of bioethics, in addition to animal ethics and environmental ethics. It was rather driven by urgent cases like the “Tuskegee Syphilis study”.12
- Gordon J. “Bioethics.” Internet Encyclopedia of philosophy. 2012, http://www.iep.utm.edu/bioethic/
Many professional medical and related healthcare organizations in the US now require bioethics training for their certifications. Federal regulations in the states as well as other countries now require medical universities to include research ethics in their syllabus.13
Today, times have changed; and there are guidelines at both regional and international level for ethical biomedical research. Researchers just need to act in line with these principles. In those days, the challenge was lack of guidelines, but today there is no such challenge; rather the only challenge is to strictly adhere to the available guidelines. There need to be penalties for violating the guidelines, so that any investigator/ researcher who disobey them face strict disciplinary action. The intent should also be to see that there is no repetition, anywhere in the world, of a study like “Tuskegee syphilis study”.
One can only plea the US government authorities and public health officials to know and understand the fears of people whose faith in the healthcare system has been damaged. There needs to be a link established and acknowledgement between public health and community trust. Particularly, the authorities should strive to eliminate any type of racial stereotype of people, in the future.
SUMMARY
In summary, the longitudinal study was nothing more than a nontherapeutic, unethical, and racial experiment involving a large group of uneducated black men who died deprived of treatment. A lot of literature in recent years has voiced the unethical principles followed in this study with a view to contribute a more secure future for everyone.
- Anne Donchin. “Feminist Bioethics”. Stanford encyclopedia of philosophy. 2009, http://plato.stanford.edu/entries/feminist-bioethics/
Bibliography
Agulanna, Christopher. “The Requirement of Informed Consent in Research Ethics: Procedure for Implementing a Crucial Ethical Norm in African Communal Culture”. European Journal of Scientific Research, 2010.Vol.44 No.2, pp.204-219.
Brandt, Allan. “Racism and Research: The Case of the Tuskegee Syphilis Study”. Hasting Centre Magazine, December, 1978, pp.1-13.
Clinton, Bill. “Remarks by the President in Apology for the Study Done in Tuskegee”. The Centre for Disease Control and Prevention. 1997, http://www.cdc.gov/tuskegee/cldintonnp.htm
Donchin Anne. “Feminist Bioethics”. Stanford encyclopedia of philosophy. 2009, http://plato.stanford.edu/entries/feminist-bioethics/
Gordon, John- Stewart. “Bioethics.” Internet Encyclopedia of philosophy. 2012, http://www.iep.utm.edu/bioethic/
HelIer, JR. and Bruyere, T. "Untreated Syphilis in the Male Negro: Mortality During 12 Years of Observation” Journal of Venereal Disease Information, 27 (1946): 34-38.
Jones, Iames. “Bad Blood: The Tuskegee Syphilis Experiment”. New York: Free Press, 1981.
Marcum, James. “Philosophy of Medicine.” Internet Encyclopedia of Philosophy. 2012, http://www.iep.utm.edu/medicine/;
Ogungbure, Adebayo. “The Tuskegee Syphilis Study: Some Ethical Reflections.” Thought and Practice: A Journal of the Philosophical Association of Kenya, 2011, 2 (2), pp75-92.
Peters, Iesse, Iarnes, H. Peters, Sidney, Olansky, and Geraldine,Gleeson, A. "Untreated Syphilis ill the Male Negro: Pathologic Findings in Syphilitic and Nonsyphilitic Patients." Journal of Chronic Disease (1955): 127-48.
Soloman, M. “THE RHETORIC OF DEHUMANIZATION An Analysis of Medical Reports of the Tuskegee Syphilis Project.” In Reverby, S. (Ed.) Tuskgee’s truths: Rethinking the Tuskgee syphilis study, Chapel Hill: University of North Carolina Press, 2000, pp. 251-265. http://www.brown.uk.com/teaching/HEST5001/solomon.pdf.
Thomas, Stephen. “The Legacy of Tuskegee” The Body: The Complete HIV/AIDS Resource. 2000, http://www.thebody.com/content/art30946.html
Vonderlehr, A, Taliaferro, Clark, Wegner, O, Helier, J. “Untreated Syphilis in the Male Negro”. Venereal Disease Information, 17 (1936): 260-65.
