Professionalism/Peter Buxtun and the Tuskegee Syphilis Study
The Tuskegee Syphilis Study, conducted from 1932 to 1972, was a study conducted by the United States Public Health Service with the cooperation of the Tuskegee Institute to record the natural history of syphilis if it were left untreated. It gained notoriety for its unethical use of human subjects and became a long-lasting source of distrust towards the U.S. government. This chapter explores the related ethical issues and tells the story of Peter Buxtun, the man who brought this study to light.
Background
editThe study, officially named the "Tuskegee Study of Untreated Syphilis in the Negro Male", initially involved 600 black men, all of whom were residents of Macon County, Alabama. Two-thirds of these men had syphilis and one-third did not. [1] The purpose of the study was to examine the progression of syphilis among black males if it was left untreated. Before the study began, the germ that causes syphilis and its symptoms were all well understood, so the purpose of the study was dubious at best.
In return for participation, the subjects were promised free physical examinations, hot meals on examination days, free treatment for minor ailments, and burial stipends to their survivors if they died. Because most of the men were poor, the incentives were very enticing. None of the subjects, however, were told of the purpose of the study, and those infected with syphilis were never informed. Charles Pollard, one of the subjects who had syphilis, recalled: "I went on over and they told me I had bad blood. And that's what they've been telling me ever since... they never mentioned syphilis to me, not even once." [2]
In addition, many of the subjects believed that they were being treated for the "bad blood." "They been doctoring me off and on ever since then, and they gave me a blood tonic," said Pollard. However, no treatments for syphilis were administered throughout the length of the study. In fact, PHS officials made sure other doctors did not give the infected subjects treatments by telling the subjects they would lose their benefits if they sought treatment outside of the study. [3]
In 1946, fourteen years after the study began, penicillin was discovered to be an effective cure for syphilis. The standard treatment for syphilis before 1946 consisted of injections of arsenic and mercury, poisons that sometimes did more harm than good. [4] Because of its safety and effectiveness, penicillin quickly became the standard treatment for syphilis. PHS officials, however, continued to deny the infected subjects treatment and prevented them from seeking treatment outside of the study. Reports indicate that by 1969, between 28 and 100 men died as a direct result of syphilis and many others developed serious heart complications that contributed to their deaths. [5]
In 1972, stories on the Tuskegee study broke out on several major newspapers. The ensuing public outcry immediately forced PHS to terminate the study, which had gone on for forty years. The man that brought this story to light was Peter Buxtun.
Buxtun's Story
editPeter Buxtun is a former employee of the PHS. He discovered the Tuskegee study through several of his co-workers, and was especially taken aback when learned the participants were not being treated. He wrote a letter to Dr. Williams J. Brown, the former director of the Division of Venereal Diseases, "expressing grave moral concerns about the experiment."[6] As a result, Dr. Brown flew Buxtun to Atlanta to attend a scientific meeting where he met two men, one being Dr. John Cutler.
Dr. Cutler, a health officer with intimate knowledge of the study, proceeded to "straighten out" Buxtun. "He was infuriated," stated Buxtun. "He had obviously read my material, thought of me as some form of a lunatic who needed immediate chastisement and he proceeded to administer it." Dr. Cutler then launched an impassioned defense of the experiment, stressing how it would benefit physicians who were treating syphilitic blacks. "Buxtun was neither intimidated nor impressed." He believed blacks were being used as "human substitutes for guinea pigs," and informed the officials of the ramifications of the public discovering this study. Peter resigned from the PHS in 1967, and he wrote another letter to Dr. Brown the following year stating, "The group is 100 percent Negro... This in itself is political dynamite and subject to wild journalistic misinterpretation.”[7] When Buxtun realized nothing was going to come of his letter, he contacted a reporter and told her about the study. The reporter contacted her editor, who then assigned another woman to the story. On July 25, 1972, the Washington Star published her article. The American people, as Buxtun foretold, were outraged when they read about the project. Public health officials had no luck attempting to justify the program. The Tuskegee Study ended later that year and every survivor received $10,000.”[8]
Aftermath of the Study
editThe Public Health Service rushed to defend itself as stories of the study broke out across major newspapers. It contended that because the best treatment in 1932 was dangerous and hardly effective, little harm was done in leaving the subjects untreated.[9] Most journalists accepted this argument, but some argued that such claims cannot be made retroactively: "The government from the moment the experiment began withheld the best available treatment for a particularly cruel disease. The immorality of the experiment was inherent in its premise."[10] Whether this was ethical might have been controversial, but almost no one approved PHS's decision to deny the subjects penicillin when it became the standard treatment. Many pointed a finger at Dr. John R. Heller, the director that oversaw the study between 1943 and 1948, but Dr. Heller denied all responsibility and shockingly declared that "There was nothing in the experiment that was unethical or unscientific."[11] A congressional hearing was conducted and several class action lawsuits were brought against the PHS, all of which were settled out of court.
Legacy of the Controversy
editAs a result of Peter Buxtun’s testimony, medical organizations became pressured to explicitly state their commitment to protecting the rights of human test subjects. The National Research Act, signed in to law in 1974, created the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research.[12] The Commission, which releases reports and studies related to bioethics and human medical rights, issued its most well-known document, the Belmont Report, in 1979. The report spells out what should be required ethical principles in medical research: respect for persons, beneficence, and justice. The report also dictates common applications that are known today in human research, such as informed consent, assessment of risks and benefits, and selection procedures for test subjects.[13] It is likely that the principles and procedures developed in the Belmont Report were produced as a direct response to the ethical shortcomings discovered by the revelation of the Tuskegee Study.
Presidential Apology
editAlthough legislation created these medical organizations to improve the ethical oversight of human medical research, the United States government did not formally respond to the Tuskegee Study until 1997, 65 years after the beginning of the Tuskegee Study and 27 years after Buxtun’s whistleblowing. On May 16, President Bill Clinton officially apologized for the actions of the US Public Health Service, stating that “what was done cannot be undone, but we can end the silence…what the United States government did was wrong and I am sorry”.[14] Herman Shaw, at that time 94 years old and one of the five surviving members of the study, responded by thanking him “for doing [his] best to right this wrong tragedy and to resolve that Americans should never again allow such an event to occur”.[15]
Ethical Implications
editThe four core values of the United States Public Health Service are: leadership, service, integrity and excellence. The description under "service" on the PHS website is, "Demonstrates a commitment to public health through compassionate actions and stewardship of time, resources, and talents." The description under integrity is, "Exemplifies uncompromising ethical conduct and maintains the highest standards of responsibility and accountability."[16] It is hard to imagine an organization with values such as "compassion" and "uncompromising ethical conduct" allowing this type of a study to take place. Dr. Brown showed to Dr. David Sencer, the director of the Center for Disease Control and Prevention (CDC), the second letter that Buxtun wrote. "Neither official thought they were doing anything wrong, but they decided to convene a 'blue-ribbon panel' to evaluate the study... Everyone at the CDC supported the program and thought it should continue until the last participant was autopsied."[17]
Conclusion
editWhile this statement would seem to have closed the door on the United States’ involvement in human rights violations in medical research, the government once again found itself having to account for another case of unethical medical research. In October of 2010, Secretary of State Hillary Clinton formally apologized for infecting hundreds of Guatemalans, including institutionalized mental patients, with sexually transmitted diseases without their knowledge or permission from 1946 to 1948. [18]
This latest apology by the United States government proves that the events of the Tuskegee Syphilis Study are not an isolated case. On at least one other occasion, government agencies intentionally took advantage of individuals with reduced autonomy, in the pursuit of scientific advancement. In the case of Tuskegee Syphilis Study, members of the United States Public Health Service targeted poor, uneducated sharecroppers. Subjects of the study were misled about the purpose of the study, and were prevented from receiving medical assistance. Even after a simple, readily-available cure for the disease was discovered, Penicillin was intentionally withheld from study participants.
Just as with the events of Arthur Andersen's questionable accounting practices, organizational corruption by upper management resulted in the continuation of unethical practices. However, the Tuskegee case diverges markedly from Arthur Andersen in the fact that many of the leaders of the study truly believed that they were acting correctly, despite the harm that they were causing. While it is hard to think that any of the accounting firm’s managers believed that they were benefiting anyone besides themselves in their practices, Dr. John Heller, for example, stated after the Buxtun testimony that “for the most part doctors and civil servants simply did their jobs, [many] worked for the glory of science”. [19] Considering this quote, it seems that some believe the potential benefits of medical advancements may at times allow for the knowing manipulation of test subjects.
References
edit- ↑ Center for Disease Control (2011). U.S. Public Health Service Syphilis Study at Tuskegee, http://www.cdc.gov/tuskegee/timeline.htm
- ↑ New York Times, July 27, 1972, p.18
- ↑ New York Times, July 27, 1972, p.2
- ↑ Atlanta Journal. July 27, 1972, p2.
- ↑ James H. Jones (1981). Bad Blood, The Tuskegee Syphilis Experiment, p2. The Free Press, New York, NY.
- ↑ James H. Jones (1981). Bad Blood, The Tuskegee Syphilis Experiment, p191. The Free Press, New York, NY.
- ↑ James H. Jones (1981). Bad Blood, The Tuskegee Syphilis Experiment, p192-3. The Free Press, New York, NY.
- ↑ James H. Jones (1981). Bad Blood, The Tuskegee Syphilis Experiment, p204. The Free Press, New York, NY.
- ↑ Millar quoted in Montgomery Advertiser, July 26, 1972, p1
- ↑ St. Louis Dispatch, July 30, 1972, p2D.
- ↑ New York Times, July 26, 1972, p1
- ↑ Office of Integrity. Human Research Subjects. University of Nevada, Las Vegas: http://research.unlv.edu/ORI-HSR/history-ethics.htm
- ↑ Office of Human Subjects Research. The Belmont Report: Ethical Principles and Guidelines for the protection of human subjects of research. National Institutes of Health: http://ohsr.od.nih.gov/guidelines/belmont.html
- ↑ The White House, Office of the Press Secretary. (1997, May 16). Remarks by the President in Apology for Study Done in Tuskegee. FirstGov: http://clinton4.nara.gov/textonly/New/Remarks/Fri/19970516-898.html
- ↑ Thomas, S. B. (2000, January). The Legacy of Tuskegee: AIDS and African-Americans. The Body: http://www.thebody.com/content/art30946.html
- ↑ U.S. Public Health Service Commissioned Corp: http://www.usphs.gov/aboutus/corevalues.aspx
- ↑ James H. Jones (1981). Bad Blood, The Tuskegee Syphilis Experiment, p195. The Free Press, New York, NY.
- ↑ CNN Wire Staff (2010, October 1). US apologizes for infecting Guatemalans with STDs in the 1940s. CNN World: http://articles.cnn.com/2010-10-01/world/us.guatemala.apology_1_apologies-research-study-guatemala-city?_s=PM:WORLD
- ↑ Cockburn, Anthony. (1998). Whiteout: The CIA, drugs, and the Press. New York: Verso.