MR. BUXTON: Thank you, Mr. Chairman. In hearing the statements that the gentlemen who just left made, I have a copy of that 25-year certificate of appreciation if you would care to see it. I do not know if you have seen one previously. Perhaps later I could show it to you.
I could read it to you if you would like to have it in your record.
SENATOR KENNEDY: All right.
MR. BUXTON: It is a form copy of what I have here, a Xerox, large type at the top. It says the U.S. Public Health Service, and then there is a circle about the size of a half dollar with the number 25 in it. It says: “This certificate is awarded to”—and then a participant’s name is typed in—“in grateful recognition of 25 years of active participation in the Tuskegee medical research study.”
At the bottom it says “Awarded 1958.”
There is a seal of the U.S. Public Health Service and a signature of the Surgeon General.
Now as to my involvement, being that I was a resident in San Francisco, physically removed from Tuskegee, I suppose the best way that I would have giving this would be to read the statement that I prepared, which is a brief synopsis.
In December of 1965 I was hired as an interviewer/investigator by the U.S. Public Health Service and was assigned to the Venereal Disease Clinic then operated by the city of San Francisco at 33 Hunt Street. I was given a training course in the medical effects, diagnosis, and treatment of VD and was given further on-the-job training at the clinic. While my work dealt primarily with patients in the early—infectious—stages of syphilis, I saw numbers of patients undergoing diagnosis and treatment for late syphilis.
Peter Buxton, now an attorney in San Francisco, was a venereal disease investigator with the Public Health Service in San Francisco in the 1960s. His persistent questioning of the study and the information he provided to the Associated Press led to the study’s public exposure in 1972.
Originally published in Quality of Health Care: Human Experimentation, 1973, Hearings before the Subcommittee on Health of the Committee on Labor and Public Welfare, 93rd Cong. (Washington, D.C., 1973), 3:1223–28.
In the fall of 1966 I overheard an older fellow worker discussing the Tuskegee study. As I recall, most of us had heard something of this and the earlier—1891–1910 Oslo, Norway, study of untreated human syphilis. The effects of untreated syphilis figured prominently in both my prejob training and the information we helped disseminate to doctors and the public.
On this occasion, however, I was startled by being told of a Tuskegee participant who had gone insane and had been diagnosed syphilitic and then treated by a private physician. My friend said that CDC—the Communicable Disease Center, USPHS, Atlanta—had been annoyed by this as it jogged their statistics. He said that private physicians and public clinics in the Tuskegee area had been notified not to treat men participating in the study that this insane individual had been brought to a doctor out of the geographic area of this notification.
Part of my job was to write a bimonthly research narrative on some subject related to our work. I wrote to CDC in Atlanta requesting information on the Tuskegee study and was surprised to receive what seemed to be the entire, nearly complete file of published reports. I did not request nor did I receive any individual medical data.
Upon reading the reports, I was shocked by the statements such as: “An important phase of the study has been the performance of autopsies.” “Mortality and morbidity are consistently higher among the untreated syphilitics,” and other passages which indicated the participants did not realize what was happening to them. There were some comments which talked about one of the participants being asked about pains in his chest. Perhaps you know one of the effects, one of the deadly effects of those who are killed by syphilis is chest pain, perhaps caused by enlargement of the aorta. One of the public health documents that we used to hand out to physicians had a fantastic picture of an individual with a lump on his chest the size of his fist. This was his aorta having eaten itself way out of the front of his chest.
These participants were asked about these chest pains and in the report which I was at that time reading, it said, well this man when asked if he had any chest pains, any difficulty walking upstairs, heavy labor, he made a comment that with his old mule he could plow all day, but with his new or younger mule he could not do that.
That was the level that the people seemed to understand, their physical involvement, that they seemed not to comprehend or even care much about syphilis, that they were more concerned with the weather and how it effected their crops. That is sort of path raising what was in there.
Upon reflection, I excerpted sections from these reports and from other sources, including the Proceedings of the International Military Tribunal, Nuremburg, into an attack upon the moral justification for the study. I pointed out that the Tuskegee study could be compared to the German medical experiments at Dachau and that public disclosure of such a scandal could jeopardize congressional funding for other beneficial PHS projects.
My superiors were shocked at what I had done, afraid of losing my job—my boss thought he was going to be fired along with me—but after warning me that I would probably be fired, they agreed to forward my report to CDC.
SENATOR KENNEDY: Why did they feel you were going to be fired, and why did your boss fear for the loss of security?
MR. BUXTON: I was possibly the lowest cog on the wheel of the organization at that time.
SENATOR KENNEDY: Would they not want to find out about this kind of situation? Would they not welcome this kind of suggestion?
MR. BUXTON: That is a difficult question for me to answer, sir. Nobody in the position in a bureaucracy likes to rock the boat. This was very definitely boat rocking of the type that was not ever expected, was not encouraged, was not discouraged, just was not thought to be a thing to have happened.
Also my boss did not think that anyone in CDC would appreciate the comparison of their work to the work of Dachau. It was a pretty drastic thing that I did.
I did not however feel that the report would attract enough attention, so on November 9, 1966, I wrote a personal letter to Dr. William J. Brown, Chief of the Venereal Disease Branch of CDC. This letter preceded my report by about 1 week and was written as a private citizen. In it, I questioned the volunteer status of the participants and, among other things, asked whether untreated syphilitics were still being followed for autopsy. I have a copy of this letter with me.
The initial reaction seemed to be shocked silence. Recently when I testified before the DHEW ad hoc investigation I was given a draft copy of a reply to my letter which I never received. Instead, I was informally interviewed by a high-level administrator from CDC who was spending Christmas with relatives in San Francisco. I elaborated to him what I felt was wrong and he said he would convey my stand to Dr. Brown. Nothing happened for a couple of months.
About 3 months later I was flown to CDC Atlanta where I met with Dr. William J. Brown, three other administrators, and one of the doctors who had set up the Tuskegee study. I have a copy of Dr. Brown’s memo on this meeting. I recall being ushered into a large conference room and getting a rather stern lecture from the doctor who had been instrumental in setting up the study. After he outlined the details and supposed benefits, he asked if I had any questions.
I then read excerpts from the Tuskegee reports and I vividly recall his reaction to hearing one part. He jumped up saying: “Let me see that, I didn’t write that, it must have been written by one of my colleagues.”
The excerpt mentioned that without the “suasion”—that is the word used in the report—without the suasion of free transportation, free hot lunches, burial benefits, and treatment for other disease, it would have been impossible to secure the cooperation of the participants and their families.
At that point the conversation changed more from a lecture—they were sort of placating me; they could not understand why I brought all of this up. Apparently none of them was aware of it, including the doctor who had originally participated in setting up the study. We then had maybe a 10-minute discussion of what should be done. I said I thought the people should be treated. I was then told that people who are elderly and have syphilis, that there is a certain risk. I do not know if you are familiar with the reaction that often or sometimes follows treatment for active syphilis. I have seen a number of patients go through this reaction, headache, chills, and fever, and some people become quite frightened that they are dying.
I was told this is often enough to preclude treatment of elderly persons, who otherwise do not have any visible symptoms of long-term syphilis.
About a year later I left the Public Health Service and went to law school. I continued a correspondence with Dr. Brown and suggested continually these people either be treated or something be done about the study. I have copies of this correspondence. In this correspondence I have a letter from Dr. Brown which I believe misstates a few facts. If you would like, I could either read this letter for you or submit it to be put into your record.
SENATOR KENNEDY: We will put it in the record.
[The letter referred to follows:]
February 27, 1969
Mr. Peter J. Buxtun
1730 Kearny Street
San Francisco, California 94133
Dear Mr. Buxtun:
I have delayed answering your letter of late November 1968 until a planned review of the Tuskegee Study was completed.
Following the review we assembled a committee of professionals from outside the National Communicable Disease Center to consider all aspects of this long-term study, including the point you have made in your letter; namely: treating the remaining persons in the study group.
After an examination of the data and a very lengthy discussion regarding treatment, our committee of highly competent professionals did not agree nor recommend that the study group be treated. The youngest living member of the study group is 69 years old. The question of treating persons of this age and older, unless it is demonstrated that active disease is present, is a matter of medical judgment since the benefits of such therapy must be offset against the risks to the individual.
We will be working with the State Health Department, the Macon County Health Department and the local Medical Society of Tuskegee to assure that all possible individual attention be given to people who participated in the study. To this end we will continue to augment the staff available in Macon County.
You can be assured that competent professionals have studied the point you made and that each person still in the study will be evaluated fully.
Sincerely yours,
William J. Brown, M.D.
Chief, Venereal Disease Branch
MR. BUXTON: Beyond that, there is not much that I have to say. While I was in law school, I contacted several professors and told them this story. I told the story a number of times to many people. Dean Prosser, who was until his death one of the country’s authorities on torts, discouraged me and said it would merely be stirring up litigation to do anything about this study. I finally in desperation mentioned the story to a friend of mine in the Associated Press and she in cooperation with Ms. Heller broke the story to the public and we now have the current situation.
When the story was broken, I did travel to Tuskegee. Ms. Heller and I interviewed some people there, and I was quite bothered by the fact that these people, participants, probably now are absolutely noncontagious, probably were noncontagious at the time the study was begun, but nobody seems to care to publicize this. I tried to get some publicity for it in the local Tuskegee paper. I think this was done. I asked Mr. Gray about it earlier. He said, yes, there had been a small amount of publicity on this fact. I did not want the population of Tuskegee to shun these participants because they had had or at that time still had syphilis, and of course there were the controls.
SENATOR KENNEDY: What bothered you most about the study?
MR. BUXTON: The fact that the participants really did not seem to be consulted. They were being used. It was difficult for me to tell really what was going on from the geographical distance, from only the technical medical reports that I had to work on. It seemed apparent to me that these people had been told that they had a disease and that they could receive some benefits as they did some things, and in some sort of hazy way their cooperation was induced.
I do not use the word “consent.” I felt that what was being done was very close to murder and was, if you will, an institutionalized form of murder and something the Public Health Service should have no part at. At that time I was an employee of the Public Health Service, and I felt that good work was being done and I could only see this damaging work of the Public Health Service.
SENATOR KENNEDY: Why do you think there was such reluctance, even going back to 1966, for others in the Department to move on this issue? This is not 1932 or 1934.
MR. BUXTON: Sir, I feel that it had become an accepted thing within the Public Health Service. Oh, yes, so and so over in that office is working on Tuskegee, and here is some data that we got, and nobody had paid any attention to it for years. It was just an ongoing thing, not subject to any review.
I think the review of 1969 was due to this confrontation that I just described to you. I think that was the first time it had occurred, to see what circumstances differed after the advent of penicillin, and before 1932, and they were shooting arsenic into people’s veins, and anywhere from 1 out of every 2,000, 1 out of every 7,000 injections would cause death or other different things, I am sure you have had testimony on that. Nobody seemed to think of it.
There was one other factor, which if I might mention in conversations at the time the story was broken, I called various people at CDC, and I was told that there had been a great lack of leadership at that time in that particular area and that certain individuals had actually been demoted as a result of basic incompetence having nothing to do with Tuskegee. I cannot speak of any personal knowledge of this, but this was said to me in a telephone conversation.
SENATOR KENNEDY: Why did you come to feel that you had to take the route that you took in order to get some action?
MR. BUXTON: Sir, I got the idea that this is accepted, that it was published regularly, the Public Health Service wished to call some attention to the usefulness of the data that were being gained. The publications were not terribly interesting. They were generally in an obscure medical journal. I, on reflection, today, think what I did was a bit rash, but eventually it did lead to these results. I thought something needed to be done immediately, and I felt people were dying at that time. I did not feel that 1 or 2 years was an acceptable length of time to wait.
I, at the time, was eager to get something done then.
SENATOR KENNEDY: Did you find any other studies that were as troublesome as this to you?
MR. BUXTON: No, sir. The other thing that did bother me, quite far afield from here, I, at the time, was also bothered that I felt the Public Health Service statistics were being misused.
SENATOR KENNEDY: In what respect?
MR. BUXTON: I felt that there was an active program to sell the public on venereal disease epidemic and the extent to which this epidemic involved teenagers. I found that there had been an extensive public relations job done with our statistics. Part of my job was to gather statistics. Part of my job was to go around and make sure the doctors reported every case that came through their office.
Then later I would notice that, say, a certain city perhaps in California, perhaps elsewhere would suddenly publicize—we have had a 45 percent increase in reported venereal disease. I would know that maybe three Federal investigators had been assigned to that city, and making them report. The doctors merely previously would treat someone, would not report, and would sort of neglect California statutes that would say these cases had to be reported, particularly with gonorrhea, not so much with syphilis—a large part of syphilis was reported. I felt a rather concerted program to harp on the fact that there was a lot of VD. I think the word VD should be thrown out. I think it is basically misleading to the nature of the problem.
Most of the infection is gonorrhea, and nobody really dies of gonorrhea, and a small amount of syphilis. The information is packaged and says VD kills. Yes, syphilis kills, but most of it was gonorrhea. This was a report of estimated cases.
Then I noticed things like the National Hospital Association coming out with a big anti-VD program. I have contacted them. I found that they gathered most of their statistics from official Public Health Service reports.
They then tried to enlist volunteers to organize chapters or whatever and to pressure Congress to increase appropriations for Public Health treatment of venereal disease. It strikes me that somehow public money is being used to pump up and alter statistics into sort of handholding organizations that then pressure Congress. In other words, tax money is being used to lobby Congress. It is a long way around the circle, but I think somebody should look into it.
I have not had sufficient contact with it. I think what we have here is multimillion-dollar industry keeping charitable organizations and secretaries office space, and high priced personnel.
Again I am sorry if this had wandered off the field of Tuskegee, but you asked me what other problems I saw.
SENATOR KENNEDY: Thank you very much. We appreciate your appearance here and thank you for sharing your experience with us.
MR. BUXTON: Thank you, sir.