FRED GRAY
I have been involved with the Tuskegee Syphilis Study since July 27, 1972, when Mr. Charlie Pollard came into my office and asked me if I read the newspaper about the men who were involved in the syphilis tests for “bad blood.” He said he was one of the men. He related that a few days before, he was at a stockyard in Montgomery and a newspaper woman found him and questioned him about the Tuskegee testing program, and asked him if he knew Nurse Eunice Rivers. The reporter engaged him in a conversation about his involvement in a health program since back in the thirties. During our conference, Mr. Pollard related in detail his involvement in the experiment. As a result of our discussion, I agreed to represent Mr. Pollard in a lawsuit against the government and others who were legally responsible for operating and maintaining the experiment.
Mr. Pollard’s statement confirmed the story I had read while flying from Washington, D.C., to Montgomery a few days earlier. As we saw in the previous chapter, that wire service article by Jean Heller was the first public exposure of the Tuskegee Syphilis Study, although as it developed there was considerable documentation of the Study in the medical literature and there were many doctors, health personnel, undertakers, white employers, college administrators, and draft board members in the Macon County area who had knowledge if not complete understanding of the Study.
When Mr. Pollard came into my office on July 27, 1972, my life was already quite busy. I had many civil rights cases pending in addition to my general practice of law; I was minister of a church; Bernice and I had four small children; I was trying to be a good husband; and I was in the middle of a legislative term, in which I served as one of the first two African Americans elected since Reconstruction to the Alabama House of Representatives.
Fred D. Gray Sr. is a distinguished civil rights attorney in practice in Tuskegee and Montgomery, Alabama. He has served as the lawyer for the study’s survivors and heirs in their lawsuit since 1972. Originally published in Fred D. Gray, The Tuskegee Syphilis Study: The Real Story and Beyond (Montgomery: Blackbelt Press, 1998), 80–99. Reprinted by permission of the Blackbelt Press.
My legislative service was complicated by the fact that voting rights litigation, which I had been involved in myself, led to a judicial decree that Alabama’s unfair state electoral districts would be replaced by single-member districts based on an equal apportionment of the population. Under the old system, which had been in force since the 1901 Alabama Constitution effectively disfranchised African Americans, legislators were elected to the House of Representatives from multi-member districts and the representation was not proportional to the population. This allowed the big planters from the small predominantly African American rural counties to dominate the political process since they had as much power as the representatives from the large urban counties but were accountable mainly to themselves and their cronies. In 1965, African Americans obtained the right to vote, and we had a majority in the district encompassing Macon, Bullock, and Barbour counties. In 1970 I was elected, along with Thomas Reed, the other African American serving in the State Legislature.
I could tell many stories about this period and I did in my first book, Bus Ride to Justice. These were very interesting years in Alabama, to put it mildly. In any event, in 1974 there would no longer be two House seats from the district of Macon, Barbour, and Bullock counties. This meant a vigorous campaign against Thomas Reed in the spring of 1974. My wife, Bernice, had some real strong feelings about my running for re-election. She knew I was more qualified than Thomas Reed, but she believed that he was a better politician. She felt that he would probably win the election and that in reality he was more suited for the political shenanigans that went on in the Legislature. She felt that by the time my term ended, I would have proved to the white community and to all that I was an effective legislator, and that African Americans could serve in the Legislature with distinction. I would have made my contribution, and then I could return and do my work in the church and the law office.
The Tuskegee Syphilis Experiment was just one pending case at Gray, Seay and Langford, the law firm that I had built, with my partners Solomon Seay and Charles Langford, into the largest African American law firm in Alabama at that time. We had offices in Montgomery and Tuskegee and we had many civil, criminal, and civil rights cases. However, I recognized that the Tuskegee Syphilis Study was one of the largest cases I had. Bernice recognized that, too, and she thought, rather than for me to be involved in politics or trying to do so much in the Legislature, I needed to be devoting my time and effort towards this big and very important case. Bernice kept me focused on this case. She would not let me forget it, not put it on the back burner. She was determined that I devoted the time and effort to this case, because it could be my biggest case. She was right.
Of course, I thought I should stay in the Legislature. So I made up my mind to run for re-election and, as Bernice predicted, I lost the election to Thomas Reed. This turned out to be one of those cases where pride goeth before a fall, but in this case, at least, the fall was for the best because it allowed me to devote my full attention to the lawsuit that was beginning to gather steam.
As a result of our initial investigation into the case, we reached the following conclusions:
1. The United States government violated the constitutional rights of the participants in the manner in which the study was conducted.
2. The government knew the participants had syphilis and failed to treat them—even after penicillin became available.
3. The Public Health Service failed to fully disclose to the participants that they had syphilis, that they were participating in a study, and that treatment was available for syphilis.
4. The Public Health Service led the participants to believe that they were being properly treated for whatever diseases they had, when in fact, they were not being meaningfully treated.
5. The Public Health Service failed to obtain the participants’ written consents to be a part of the study.
6. The Study was racially motivated and discriminated against African Americans in that no whites were selected to participate in the Study; only those who were poor, uneducated, rural and African-American were recruited.
7. There were no rules and regulations governing the Study.
We believed those were the key issues to be resolved in a lawsuit. Of course, once the lawsuit was filed, we must prove our allegations, and in a case involving as many plaintiffs and defendants and stretching over as long a time span as this one, we knew that would be a Goliath-sized task for our David-sized law firm.
The work involved in developing this case was tremendous. I was reminded of advice given me by my law school adviser, Professor Samuel Sonnenfield. He encouraged me to seek assistance of other more experienced lawyers, and be willing to share a fee with them, particularly during the early years of my practice. As I had done with civil rights cases throughout my career, I tried to find someone to assist me in this case.
Finding and obtaining assistance was more difficult than I ever imagined. For almost a year, I telephoned and traveled all over the country, looking for someone to help me with this potentially historic case. I needed help in conducting legal research, drafting pleadings, filing briefs, and financing the case.
With previous civil rights cases, I was usually able to obtain such assistance from the NAACP or the NAACP Legal Defense Fund. But both organizations are non-profit corporations, whose policies did not permit them to assist in feegenerating cases.
It was going to take a substantial amount of money to develop this case. I could not find anyone who was willing to give me assistance in my two areas of need.
With a recommendation from Jack Greenberg, director counsel of the NAACP Legal Defense Fund, I sought out Michael I. Sovern, then dean of Columbia Law School, and one of his professors, Harold Edgar. They agreed to assist me with legal research.
I still had the responsibility of financing the case. I went to my local banker, James Allan Parker, president of Tuskegee’s Alabama Exchange Bank, discussed my problem, and he indicated a willingness to make a loan. It was not a loan on a contingent fee basis. No banker would have done that. I would have to pay the bank regardless of the result of the lawsuit. However, he was willing to wait until there was a resolution of the case before the loan would become due. With these two components in hand, I was now ready to file the lawsuit.
On July 24, 1973, the lawsuit was filed. Jurisdiction was invoked under (1) the Fourth, Fifth, Eighth, Ninth, Thirteenth and Fourteenth Amendments to the U.S. Constitution; (2) the civil rights laws 42 USC Section 1981, Section 1985(3) and Section 2000(D); (3) the Federal Torts Claims Act, 28 USC 2671; (4) the federal common law, and (5) the Constitution, statutes, and common law of Alabama.
This lawsuit was to redress grievances by damages and injunctive relief in order to secure for the plaintiffs themselves, and the class they represented, protection against continued or future deprivation of their rights by the defendants. The goal was to get the government’s full attention. Originally, $1.8 billion in damages was sought for the surviving participants and the heirs of those who had died.
In the complaint as finally amended (on August 1, 1974) we had four categories of plaintiffs:
1. Living syphilitics
2. Living controls
3. Personal representatives of the estates of deceased syphilitics
4. Personal representatives of the estates of deceased controls.
The named plaintiffs included Charlie Pollard, Carter Howard, Herman Shaw, Price Johnson, and others. My law partner, Solomon Seay, Jr., assisted with the case. Cleveland Thornton, a young white lawyer from Barbour County and a member of our firm at the time, also assisted me in this case.
The defendants were the United States of America, Casper Weinberger as Secretary of the Department of Health, Education, and Welfare, Dr. Ira L. Myers, State Health Officer; Dr. John R. Heller, individually; Dr. Sidney Olansky, individually; and others. The defendants were represented by William J. Baxley, then Attorney General of Alabama, James T. Pons, Kenneth Vines, Calvin Pryor, Lawrence Klinger, Herman H. Hamilton, Jr., Champ Lyons, W. Michael Atchinson, and Oakley Melton, Jr.
Over the years, I have been asked why I did not include Nurse Eunice Rivers Laurie and Tuskegee Institute as defendants in this case? Isn’t it a fact that each of them played a part and should bear some of the blame in connection with the Tuskegee Syphilis Experiment? Did I fail to add them as defendants because they were black and all of the other defendants were white? Did I fail to add them because all of the plaintiffs were African Americans? Isn’t it a fact that if I had named them as defendants it would have adversely affected the allegations that the Tuskegee Syphilis Experiment was racist?
All of these questions are related and are fair questions to be considered.
Nurse Rivers was a lone African American female working on a health program financed by the federal government. She was working directly with white doctors from Washington, D.C. Neither the racial climate nor society’s attitudes toward government encouraged her questioning the activities of white government officials. She did not question the fact that the government was financing and supporting the program.
She believed she could help, and at the same time she would be helping the federal government. Miss Rivers was powerless to have either begun, continued, or stopped the program. She worked in an environment where all of her superiors were white, while she worked directly with African American men. Even after penicillin became available, Nurse Rivers had no voice as to whether or not these men would be given penicillin. In 1969, a committee was formed to consider whether or not the program she had worked on for more than three decades—and had been the most constant aspect of for more than three decades—should continue. Nurse Rivers was not invited to participate in that discussion or to be a policy-maker in that decision. She was not even consulted. The white doctors from Washington concluded that the experiment should continue and that the participants still should not be treated for syphilis. The Alabama Department of Public Health, for which she also worked, again under the direction of white male doctors, went along with this program from the beginning to the end.
So you have one lone African American female, who from 1932–1972 was supervised by white doctors from Washington and by the white health officer from Macon County, in a program sponsored by the federal government. It would have been unrealistic for Nurse Rivers to express any views opposing the State of Alabama, the Macon County Health Department, white doctors from Washington, D.C., and the United States government. I felt Nurse Rivers was misled, betrayed, and was also a victim of the Tuskegee Syphilis Study. In preparing the lawsuit, after reviewing the facts and circumstances, I was not going to subject her to being a defendant in the case. She was not the moving force in organizing, maintaining, or perpetuating the experiment. She was nothing more than one of many lower-level government employees who were involved in the Study but not named as defendants.
I did not include Tuskegee Institute as a defendant. In the 1930s, during the Great Depression, Tuskegee Institute was an African American educational institution struggling for its very existence. The federal government came to the institution and requested that some facilities of the college hospital be used for the purpose of examining the participants in a health care program. Tuskegee Institute was being asked to cooperate with the federal government in providing health care for the participants. The cooperation was being sought in a study that began as an outgrowth of the Rosenwald Fund survey in Macon County, which was a project of one of Tuskegee Institute’s significant benefactors. As with Nurse Rivers, I felt that it would have been unrealistic to expect Tuskegee Institute to refuse to cooperate with the government. Tuskegee Institute administrators were asked to provide facilities and services; they were never invited to review or set policy. I felt the same about Tuskegee Institute as I did about Nurse Rivers—that the Institute and its officials were misled, betrayed, and taken advantage of as she had been.
Interestingly, President Bill Clinton took this same position twenty-five years later when he said:
Medical people are supposed to help when we need care, but even once a cure was discovered, they were denied help, and they were lied to by their government. Our government is supposed to protect the rights of its citizens; their rights were trampled upon. Forty years ago, hundreds of men were betrayed, along with their wives and children, along with the community in Macon County, Alabama, the City of Tuskegee, the fine university there, and the larger African American community.
So the President, in his apology to surviving Study participants on May 16, 1997, recognized that Tuskegee Institute, along with these participants, and the whole community were lied to and betrayed by the federal government.
In our complaint, we alleged the following basic facts:
1. The participants were poor, Southern, rural, African Americans, of limited education, who knew nothing of their roles as experimental subjects.
2. The Tuskegee Syphilis Study began in 1932 and was announced by employees of the U.S. Public Health Service as a new health care program beginning in Macon County, Alabama. The notices were circulated throughout the county by mail, at African American schools, and African American churches. Only African Americans were given the notices, and only African American males were subsequently selected to participate in the program. None of the participants in the Study were meaningfully treated for syphilis.
3. The participants were never told that they were being solicited to be used in an experiment.
4. The employees of the government purposely did not inform the participants when they were found to have syphilis, and intentionally withheld this information from them.
5. The government represented to the participants, or gave the impression by words and actions that they were receiving adequate medical treatment for all of their ailments. Such representations or impressions were false and were known to be false by the government. However, each of the participants reasonably believed such representations and participated in the experiment for over forty years.
6. The participants were never advised that any of them had syphilis, and they were never treated for syphilis.
7. The participants never gave their informed consent to be subjects in any such experiment.
8. No white persons were solicited or used in the Study.
9. Those selected were used in a program of controlled genocide solely because of their race and color in violation of their rights, secured by the Constitution and laws of the State of Alabama.
10. The government exploited the participants in violation of rights guaranteed under the Fifth, Ninth, Thirteenth, and Fourteenth Amendments to the Constitution of the United States, and Article 1, Section VI of the Alabama Constitution of 1901. Plaintiffs further alleged that they were injured physically and mentally. They were afflicted with distress, pain, discomfort, and suffering. Some died as a result of participating in the Study.
The theory of the case was that the government had breached its duty to the participants in failing to obtain informed consent, inform them of the nature and purposes of the experiment, and inform them of the possible hazards and effects upon the health of the participants which might result from their participation.
The government had a duty to the plaintiffs once penicillin became available to treat those who had syphilis, which it failed to do. The government violated the civil rights of the plaintiffs in that it and state officials acted under color of State law by denying them their constitutional rights of equal protection, of due process, and of privacy. The government was negligent in conducting the Tuskegee Syphilis Experiment without any established protocol for conducting the experiment, thus subjecting the participants to unnecessary risks.
Defendant Dr. R. L. Myers, State Health Office, filed an answer on September 29, 1973, substantially denying the basic allegations and raising, as a second defense, that there was insufficient information to determine whether or not all of the subjects were African American, poor, and uneducated.
On May 14, 1974, the defendant United States answered the complaint, and alleged as defenses:
1. The action was barred by the statute of limitations.
2. The injuries and damages alleged by the complaint were caused without the fault, carelessness, or negligence on the part of the defendant or any of its agents, servants, or employees acting within the line and scope of their employment.
3. It denied that the injuries and damages to the participants, as alleged in the complaint, were caused by acts of negligence, or carelessness on the part of the government.
The government substantially denied all of the material allegations of the complaint. The United States admitted, however, that the Experiment began in 1932, that the participants were African American and were in the Study; that the Study was conducted by the federal government, and that some participants had died since 1932. It denied that the causes of death were related to the Study. That was the position of the United States of America when the suit was filed in 1973.
One major problem in preparing the case for trial was the matter of obtaining discovery. According to the federal rules of civil procedure, after a lawsuit is filed, and prior to trial, a party may obtain any and all information which the other party has that may be relevant to the lawsuit. This is called discovery. We utilized several forms of discovery including depositions, interrogatories, requests for admissions, and requests for production. Interrogatories are written questions which must be answered in writing and sworn to under oath the same as if the answers were given orally in court. Interrogatories were propounded to the known living doctors involved in the Study and proper officials of the Public Health Service and to the government, but many of the answers were inconclusive. The response to the motion to produce documents during the early part of the study was met with a “no records available so far as the government knew.”
The plaintiffs then undertook to try and find those records. As a result of our independent efforts, I met Jim Jones, a medical researcher, who had located the early records of the study, from 1931–1939, scattered through some 410 boxes in the National Archives. He literally searched through each individual box and picked out the information that was applicable to the Tuskegee Syphilis Study. Jim Jones’s work was significant and made my task less difficult. He later wrote an excellent book about the study entitled Bad Blood and is now a professor of history at the University of Houston.
During the course of our litigation, we were confronted with many legal problems. As indicated early during the discovery period, the government did not know and could not locate the early documents that would give us the facts concerning the origin of the Study. There were questions as to whether or not this was an appropriate class action suit. There were serious questions concerning the suit being barred by the statute of limitations. There were major problems of standing—who had the legal right to bring the action on behalf of the deceased participants in the Study.
The original complaint was filed on behalf of the widows and heirs of deceased participants. The defendants raised the issue of standing, saying that under Alabama law, the only person who could sue for a deceased person is the personal representative of the individual estate. That meant, in the cases of participants who had died without wills, it would be necessary to file a petition in the Probate Court of Macon County in each case and have someone appointed personal representative of that person’s estate. Under Alabama law, in addition to filing an application for Letters of Administration, a bond must be filed in an amount twice the value of the estate prior to the Court granting Letters of Administration. The person who petitioned for the Letters of Administration must be a resident of the State of Alabama. Many of the deceased participants had died outside of Alabama.
This was a serious problem. The Court entered an order stating that the personal representative was the proper party to file a suit on behalf of the deceased participants, and gave us a short period of time in which to have them appointed. This was a difficult task. We needed to have appointed personal representatives for each of the deceased participants. There were 463 deceased participants. Under most circumstances this would have been an impossible task. First, we had to find individuals who were familiar with the deceased participants, for example, wives, children, close relatives, or friends. In instances where we could find none, we asked people we knew if they would serve as personal representatives of the estates of deceased participants. This required tremendous cooperation between people in the community. These men lived in all parts of Macon County. We began to talk with persons throughout the county and lined up persons who signed individual petitions, and had individuals to sign bonds so the administration could be completed.
In addition to the community involvement and finding persons to serve as administrators, we also had to locate persons who would sign bonds on behalf of these petitioners. The Judge of Probate of Macon County, in the final analysis, had to sign the order approving the bonds and appointing a personal representative on each of these estates. How could our Probate Office with its limited resources be able to accomplish such a task? I discussed this entire matter with the Honorable Preston Hornsby, Judge of Probate of Macon County. He knew the families of many of these men. In addition, he was the best politician in the county. Prior to the time he was elected Probate Judge, he was Sheriff of Macon County. In the first major campaign where blacks were able to vote, he openly solicited African-American votes and was elected Sheriff of Macon County. After successfully serving in that capacity, he ran for and became Judge of Probate.
After I discussed this matter with Judge Hornsby, he understood, was sympathetic, and gave whole-hearted support to our efforts. We literally moved a part of the Probate Office out of the Courthouse and into our office where we were able to prepare all of these documents. Within the time frame appointed by the Court and with the assistance of Judge Hornsby, we were able to have personal representatives appointed on the estates of each of the deceased participants. When the complaint was amended and filed on August 1, 1974, we had personal representatives of the estates of deceased syphilitics and personal representatives of deceased controls as plaintiffs in the suit.
The mountain of documents eventually unearthed showed that, unquestionably, government doctors knew from the inception of the Study that the participants believed they were in a treatment program. Along with letters from the project nurse indicating this, they received letters from participants’ friends asking to be included in the government treatment program.
What was done to participants in order to secure information about untreated syphilitics? Among the overreaching steps by the United States in the early years were:
1. The United States’ doctors wrote and visited every local doctor in the area, gave them a list of patients in the study, syphilitics and controls, and secured their cooperation in the study. This cooperation included not treating anyone for syphilis because it would spoil the data.
2. United States’ doctors sent these participant lists to “prominent lay people” (almost certainly white employers) to facilitate follow-up.
3. The doctors sent annual letters to participants telling them the federal doctors were coming again to treat their bad blood, and to find out whether past treatment had improved their condition.
4. Public Health Service personnel stopped participants from receiving treatment from the traveling State public health clinics and at other opportunities for treatment.
5. The Public Health Service wrote, through the Alabama Board of Health, to the local draft boards in 1941 to make sure that these men were not called for wartime physicals which would disclose syphilis and make treatment mandatory. Initially, the persons thus deprived included not only the original syphilitics, but also controls who had developed syphilis in the intervening years and had received no treatment for it. No effort was made to assure that these persons’ wives and children had been treated.
6. The doctors and nurse handed out substantial quantities of painkillers such as aspirin and tonics, as well as some codeine, as an inducement to stay in the program, knowing the participants thought it was curative treatment for their ills.
7. The doctors did all this while their own medical records and reports they published were demonstrating unequivocally that the syphilitics were dying faster, and experiencing higher rates of heart morbidity than were the controls. That point was clear to the doctors from the very beginning, and it was duly monitored by articles that plotted participants’ “death curves.” Notwithstanding their own knowledge of the heightened death curve of the non-treated syphilitics, the deliberate and affirmative program of nontreatment was continued. Moreover, an intentional decision was made not to monitor the patients for a variety of other ailments, including, most tragically, neurosyphilis.
In summary, from 1933 on, the Study strayed far from its original short-term goals. Unlike the initial one-shot survey, the long-term research design was not evaluated carefully, and the rights of the humans involved were completely submerged to the researchers’ desires to get just a little more return on their invested capital. This was the progression: the 1932 survey data, coming from syphilitics only, showed that untreated syphilitics had severe health problems, and much more complex ones than had been expected. That finding raised this question: How much damage was syphilitic in origin, and how much was the product of adverse environment? Further, the 1932–33 findings of massive heart abnormalities could be undercut if heart specialists challenged the diagnostic techniques used. To preclude challenge to the Study’s conclusions on either ground, the solution was to select a group of controls from the surveyed non-positive-Wassermann Negroes, and follow both groups for a while in order to “bring the material to autopsy.” The doctors would confirm the initial 1932 diagnoses, reject the environmental hypothesis, and additionally measure interim syphilitic damage.
This was the long-term study plan and its effectuation, as unconscionable then as now. The Tuskegee experiment was not done with therapeutic hopes. There is not the slightest question but that the doctors who established and ran this program believed, based upon the careful Rosenwald records, that the then current medications posed trivial risks compared to the consequences of untreated syphilis. CDC’s effort in 1972 to portray this study in its early years as potentially beneficial given the perceived dangers of mercury and arsenicals is inaccurate. Exactly the opposite is true. The doctors were so sure that untreated syphilis was a deadly serious problem, and that treatment was efficacious, that they wanted to prove it beyond question by control group comparisons and autopsies that would rule out any other possible explanation of data. Based on the documents, this process permitting these participants to suffer and die, seems never to have concerned the doctors in the least. The program doctors simply failed to think of the patients, their wives, or their children as human beings. This program of nontreatment then lasted forty years.
As far as later doctors were concerned, in relation to this group, penicillin’s discovery was a regrettable event, worrisome lest it pollute the sample. In their 1955 article, “Untreated Syphilis in the Male Negro,” Schuman, et al., analyzed participants’ treatment status. The authors note that eight of the men had received adequate penicillin treatment by 1951 (with seroreversal in three cases), and mention no ensuing complications. They further note that the surviving syphilitic group is now 70 percent untreated, 22.5 percent inadequately treated, and 7.5 percent adequately treated. But they argue that those patients who have had some treatment should be followed still:
[In] 1952 they are veterans of an aggregate of 5494.5 man-years of untreated disease, in comparison to only 28.5 man-years of adequately treated disease.
Since the man-years of adequately treated disease represents such a small part of the total years of observation, and in most patients the treatment was administered many years after the date of the initial infection, it is felt that the antibiotic era has not defeated the purpose of the study.
The authors’ perception of the significance of penicillin in terms of whether it spoiled the research ought to be juxtaposed against their other findings:
[T]he single most striking feature distinguishing the syphilitic group from the nonsyphilitic is that the death rate is higher among the syphilitic group. Exactly how and why more of the syphilitic group has died is not clearly discernible, but the penalty which the syphilitic patients have paid in terms of life expectancy is well-documented.
How could this disregard of human safety and life capacity have been allowed to continue? By the 1950s, a patient discovered to have latent syphilis would have been treated with antibiotics by almost every doctor in the United States, using bismuth if necessary to control adverse reactions, reactions that can occur only if the treponemes are alive and potentially dangerous.
So far as can be ascertained from the documents, no course of treatment was formally or informally considered for these African Americans until a young Public Health Service worker began complaining in 1966. Literally, not one single piece of paper out of the thousands of pages discussing every aspect of the study discusses whether treatment ought to be given. The documents reveal that the doctors believed in 1952 that a twenty-year investment should not go to waste, that this was the last opportunity to study untreated syphilis, and incredibly, that having shortened the lives of so many, they should press on with the work even though it might mean further premature deaths and disability. Even in 1969, treatment was rejected by a committee for reasons which patently included the desire to continue the Study and obtain just a little more information from the group. Compelling evidence that the 1969 determination was not made on the basis of the patients’ medical needs is that each and every one of these very same participants was uniformly urged to get treated in 1972 after the Study was exposed.
The new doctors, in the 1960s, worked and acted in an era where the requirement of informed consent for experiments was formal and unambiguous. They knew perfectly well they did not have consent, and that these men were “at risk,” albeit the risk may have been lower for the participants whose syphilis was still latent after thirty years of non-treatment. Moreover, statistics hide individual cases. One terribly potent indictment is that the subjects, ever since 1932, would have nothing to do with spinal taps. Those first taps, Vonderlehr’s Golden Needle treatment, performed without anesthetics, were exceptionally painful. The Study’s internal documents often treat the fearful reactions to this pain as proof of some rural superstitions of the participants.
Our investigation, however, led us to believe, that Dr. Vonderlehr did the taps poorly, a view shared by Nurse Rivers. Dr. Vonderlehr was tired, overworked, and very anxious because he had to get all the taps done before word of what was happening spread among the participants. After the initial taps, most of the participants made it very clear they would never submit to such a procedure again, so the PHS officials early abandoned any hope of making spinal taps a routine part of the annual checkup and the five-year surveys, fearing the Study would collapse. The doctors acknowledged they could not use the only effective diagnostic procedure available to test the presence of one of the more serious complications of syphilis. Yet the doctors knew the threat of neurosyphilitic was real: 23 percent of the participants had it in 1932 when the first survey was done. Of the first participants examined once the Study ended, 16 percent had neurosyphilis.
Finally, doctors who knew penicillin was a remedy for syphilis permitted the Study to proceed because of apparent statistical safety based on the controls’ death rates. The use of the controls’ life-expectancy as the test of safety was questionable. It assumed the comparability of the two groups except for syphilis, an assumption later doctors expressly made. However, the survey techniques utilized by Vonderlehr to get his initial sample were weighted to pick up syphilitic persons of greater than average hardiness, in that they had survived syphilis thus far and were out doing heavy work. Field hands and manual workers were sought out by Vonderlehr so that he would not have to waste his Wassermann tests on women.
The later doctors assumed comparability because they had never read the file on how the syphilitics were selected. They made the mistake of relying on their predecessors’ writings, including its reports of the participants volunteering in droves at churches and schools. But the doctors stopped working at churches in January 1933, because for every man presenting himself, three women would seek testing. If the doctors refused to treat women, the men refused to cooperate because they thought the doctors were from the Army. So the doctors went to the saw mills, the Public Works employment centers, and into the fields with Keidel tubes. The Wassermann positive rates with Keidel tubes were well below those at the churches, indicating that those syphilitics capable of doing heavy work were more than usually sturdy. It should have been no surprise, given the relative hardiness required to get into the two sample populations, that syphilitics in later years might even be doing better than controls.
Nothing the doctors might have learned about untreated syphilis could possibly justify this calculated mistreatment of a group of United States citizens. An added dimension of this tragedy is that the study was poorly done in scientific terms. Nearly all these patients were given some treatment with arsenicals or mercury, and often with both, in the course of the initial 1932–33 survey. The amount was believed too small to have much effect on the disease, but it ruined the study as one of untreated syphilis. The doctors botched the sample doing the short-term study, securing it by going through the motions of treatment, before a long-term study was even contemplated. Rather than call it quits, the doctors falsified the sample selection procedure in their initial papers by arbitrarily defining the little treatment as no treatment at all. Although it baffled later doctors how so many patients had gotten some, albeit obviously inadequate, treatment, no one had read the files. The files were found in the National Archives, meaning that an on-going medical experiment was conducted with no one involved even knowing where the papers pertinent to its initial design and early years were kept.
The government did not begin to discuss the possibility of settlement until after we obtained much of the information detailed in the earlier chapters of this book and made it known by appropriate court pleadings and briefs.
Ultimately, we were successful in getting financial compensation for each of the living participants and the heirs of deceased participants in the Tuskegee Syphilis Study. In addition, the government was ordered to continue its health care program for the living participants and widows and children of any participants who tested positively for syphilis.
While the final $10 million settlement was not what I had hoped to receive for my clients, considering all of the facts and circumstances, it was in my opinion fair and reasonable. This study started in 1932. There were a multiplicity of legal problems that would have to be resolved if there had been a trial. If this case were discovered today under the same facts and circumstances, the value of the case would be substantially higher. When the proceeds from the settlement were paid into court, the funds were placed in an interest-bearing account. It took a number of years to locate all the participants, and after the recipients had received the principal amount there was accumulated interest to disburse. Thus, we had to verify again whether the participants were living or dead, and if dead, whether there were living heirs, and in all cases we had to find current addresses. This case is still pending.
The settlement was divided into four categories:
1. Living syphilitics received $37,500.
2. Heirs of deceased syphilitics received $15,000.
3. Living controls received $16,000.
4. Heirs of deceased controls received $5,000.
The persons who suffered most and whose lives were at risk were the syphilitics. Though many received some incidental or even accidental treatment over the years, they were never treated for syphilis during the experiment, not even after penicillin became available. The controls did not have syphilis. Neither they nor their wives and children were at risk. That is why there was a difference in the amounts for the syphilitics and the controls.
When the proceeds from the settlement were paid into court, the funds were placed into an interest-bearing account. The next task was to locate the living participants and the heirs of the deceased participants. This was a major task and it took years to accomplish. Originally, we did not know who the heirs of the deceased participants were, so we had to find them. When we began to find heirs and people realized there was money involved, it became necessary to have hearings to determine who were the legitimate heirs. The principal amount of funds were finally completely distributed in 1992, except for interest payments. Then, the process started all over again to distribute the interest payments. Many who were paid principal amounts had died and we had to locate their heirs. However, more than six thousand persons have received compensation. We are still looking for some heirs to distribute interest money.
When it became generally known that money was available, some men and women claimed falsely to have been in the Experiment. In instances where participants were deceased, some falsely claimed to be heirs. As a result, during the time when claims were being litigated, the court held hearings on conflicting claims dealing with heirs.
In addition to the financial settlements, the government was ordered to continue providing other benefits including free health care for living participants and to the families of syphilitic participants, as well as free burial expenses for participants based on the cost of living index at the time of their deaths.