Talk:Tuskegee Syphilis Study

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Periodically, someone comes by this article and reads it and thinks, without doing any research, "This is terrible, things couldn't have really happened this way, this article must be biased and false."

I thought so myself until I started doing research. The more research I do on this study, the more horrible it looks. If this article is biased, it is probably biased in its mildness of condemning the study and those to kept it going after 1947.

Before you disagree (as some of those below have done), follow up on the references listed at the bottom of the article (especially the CDC web page), or go to the library and do your own research.

The doctors who started this study started with a false hypothesis in mind and with lies to ignorant patients. The study probably should have stopped as soon as they disproved that hypothesis, but instead continued. It should have shifted to testing penicillin when that became available, but did not. The study should definitely have stopped in 1947 when penicillin became widely available and was generally accepted as a cure for syphillis, but did not. Instead, the study was continued, and papers were published from it until the press discovered it and spread the word and congress came down hard and eventually set new laws to prevent this from ever happening again.

This study is a sad event in medical history that has only shaky justification for ever happening, even in the context of the time it started. --ssd 12:26, 29 Apr 2005 (UTC)

Contents 1 Time context 2 Inaccurate? 3 Sweden's Oslo? 4 Spiked online 5 Not a secret study

[edit] Time context

Dear mxpule your work on this article is great but I believe you should have included some more contextual information aout the time this study was done. I do not believe the study initiators planned to do wrong from the beginning. Back then syphilis was a terrible problem. Treatment was expensive, prolonged (a year), toxic and its efficacy unproven. The natural history of the disease was unknown. You should point out that only patients with latent syphilis were recruited for this study. It was not known if they needed treatment. They were by definition asymptomatic. You could argue that it would have been wrong to treat them with Arsenic and bismut. Without the study (up until national eradutcation programmes with penicillin) these subjects would not have got treated. As regards penicillin it is easy retrospectively, but at that point one could have argued it was wrong to give asypmtomatic subjects with a positive antibody to syphilis a new experimental drug - it could have had unknown toxicity etc etc etc. Lying to the patients was clearly wrong but back then if the investigators had gone and said "ok, you have syphilis a sexually transmitted disease blah blah..." how would the community have responded to these doctors? Lying to patients was universal then in the medical profession "doctor knows best". US and UK military experimented on their own service men with nerve gas and radiation. I believe there are probably countless examples of studies equivalent to Tuskegee (though not as prolonged) although this one is infamous because of the race component. In my mind it was not so much race but rather the arrogance of the medical profession and the time AND a class issue. So please mxpule less of the Mengele and Nazi stuff, no appeasement - this study quickly became wrong but put it into the context of the time. nitram

Sure, if one limits it ONLY to the period of the Great Depression and before penicillin, it is only extremely unethical in retrospect (pre-informed consent, etc.) and is only MOSTLY unethical in its own time (come on, medical ethics was not completely foreign an idea). But the fact that it continued so long after the invention of a treatment, and even after the exposure of the sorts of experiments by Mengele and the Nazis, shows both a tremendous lack of ethical boundaries and a tremendous lack of consideration for the patients in question. You cannot bracket it off neatly -- if they had stopped immediately, then we could say, "well, they were just trying to do good, but they didn't have any other options." The fact that they didn't do that at all seems to cast considerable doubt as to how noble their motives were, in my opinion. Anyway -- the Mengele/Nuremberg comparisons are made all the time in the medical literature, so it isn't as if this is an unheard of comparison, though so attribution of quotes would be more ideal for an encyclopedia article (I will try to help with that). In any event, the article is actually significantly low in moralizing, comparatively speaking. --Fastfission 12:33, 26 Apr 2005 (UTC)

I'm really sorry guys but you have absolutely failed to point out the pivotal fact in this whole study - bear with me:

Syphilis was untreatable when the study began. The disease goes from primary to secondary phases to a long latent phase and finally to a terrible tertiary phase where the bacillus infects the brain, eyes, heart, bone marrow etc etc to lead to a slow and terrible death. It was a truly horrible disease regarded with the same loathing as say cancer is today.

As early as 1947, penicillin was standard treatment, was highly effective and essentially now I would say there are very very few physicians in the West who have seen a case of tertiary syphilis. The pivotal point of Tuskegee is that in 1947 the study should have closed. The study participants who had syphilis should have been given penicillin and that would have been the end of it.

Instead the physicians running the study put their own intellectual curiosity of watching the natural history of the disease progress above the lives and well-being of their subjects. To put it another way, the physicians running the study cared so little for the study subjects, who where poor, illiterate and black that they preferred to let them suffer and die so they could get scientific data (that incidentally would be largely useless since syphilis had been cured). mxpule

Syphilis was somewhat treatable when the study began. That's why the study was started in the first place. Also, it was known that the men could pass on the disease to thier wives and children: I'm supporting the idea that the study was unethical when first concieved, although 1947 was indeed a turning point. Also, in Macom county, Syphilis was not neccesariy a veneral disease, it had reached endemic proportions and was being transmitted in other ways. Anybody want me to include more on the health situation in Macom county at the time, I read a primary source about it. (don't have refrence this second)--Notenderwiggin 02:05, 23 February 2006 (UTC)

[edit] Inaccurate?

What part of Tuskegee syphilis study did you find factually inaccurate? You didn't list anything in particular on the discussion page. --ssd

See the "spiked-online" article at the bottom for an account of the factual errors in this article. -- VV 03:08, 6 Apr 2004 (UTC)

Which facts in the article do you think are inaccurate? Could you be more specific as to what in the external link contradicts statements in the article? Wmahan. 20:42, 2004 Apr 25 (UTC)

I have now read the "spiked-online" article. It is fairly rambling, but does raise some good points. However, most of the medical references in the article are just wrong, and probably are using 1930's data rather than modern understanding of syphilis. (Mostly, it says that people "self cure". This is wrong. The disease commonly has 10 year dormant phases, and even in those phases causes many symptoms including neurological damage that are difficult to diagnose and recognize.) In addition, there is nothing in the article that disagrees with the wikipedia article. They even admit that medical treatment was withheld, and try to justify it in several ways (several believable to a point). I believe the wikipedia article is fairly balanced in that it fully states all sides of any possible controversy. I am going to remove the "disputed" tag. If you think the article is unbalanced, I suggest you add material to balance it out. --ssd 05:04, 11 May 2004 (UTC)

Well, there are still discrepancies. For instance, the spiked article says there were 140 patients, not 400. Saying they were "allowed" to progress is deceptive in that it implies there was some viable alternative (arsenic treatment not necessarily viable), but in fact those who were treatable were in fact treated and removed from the study. Being "allowed to sicken and die" is particularly emotive and inaccurate in this light. Furthermore, there are neutrality issues, such as failing to mention the study was motivated by a desire to help blacks, among whom syphilis was rampant. I'd like to start rewriting it myself, but I feel I want to be more thoroughly informed before I do. But while it has all these inaccuracies there should be a dispute notice. -- VV 06:30, 11 May 2004 (UTC)

Ahh, finally something substantial to fix! I don't think there is any dispute that the study started with good intentions and with 400 participants. The article here fails to mention how many participants stayed in the study. It did end bad, however. In my mind, the only real controvrsey is if the study was continued after '47 due to incompetance or unethical intentions. I think combinding the first and last paragraphs and adding these details would be well on the way to fixing this article. --ssd 12:53, 11 May 2004 (UTC)

The "spiked" article I consider to be uncredible, as it contains many medical misunderstandings and/or obsolete syphilis data. It is a tertiary or worse source. I have gone to a secondary source and added more accurate material. The study DID include 400 people. Many of them died of syphilis--that's why there's so few left. They were not just allowed to die...they waited for them to die so they could do autopsies on them and look for syphilis damage. The study may have been motovated by beneficial desires, but the study should have stopped after 1947, and instead it was continued, and proper medial treatment was blocked from the involuentary participants whenever possible. Are there any other items in this article you think are disputed, or should I continue doing research and add more material? Next item I would look for would probably be the specific symptoms victims of this study suffered from as a result of their non-treatment. (now added) --ssd 22:19, 11 May 2004 (UTC)

You've clearly done some excellent work on this article. There are parts that still make me uncomfortable, in particular the "allowed to sicken and die" part, which I think should be clarified; perhaps that they were "not provided with treatment by those carrying out the study"? Also, isn't it true that many of them never had any further sickness issues, much less succumbing? Well, in any case, I'll remove the factual notice, since it's so much better and this seems to be one of your goals. -- VV 22:41, 11 May 2004 (UTC)

Actually, Ive only begun to skim the material I found. The more I read it, the more horrible this whole issue sounds. I had previously thought that perhaps the doctors involved just didn't know about syphilis, but it sounds like they did know, and were out to prove it. Patients that they thought had been "asymptomatic" they did autopsies on, and found syphilitic leisions that had been causing much discomfort and illness. Even so, they still prevented others still alive from getting treatment. No, they didn't merely "not provide" treatment. They blocked treatment, and they did watch them sicken and die, if not worse. Yes, many of them died of syphilis while in the study. No, they were not really asymptomatic--perhaps their problems were just not attributed to syphilis. There are many reports as to what exactly the study found, and if you like, I'll try to summarize those. Also, the article on syphilis could use a better list of symptoms. When I find a comprehensive one, I'll update that article for sure. The more I look at this particular study, the worse it looks; I hadn't realized exactly how far from ethical this study had strayed. --ssd 00:32, 12 May 2004 (UTC)

As an update--the CDC page lists quite a few details. Not only were the participants of the study watched, but also they watched the spread of the disease to family members. One perhaps good thing that did come out of the study is a better understanding of exactly how damaging syphilis is. Unfortunately, they should have had plenty enough information about that by 1947. Peers reading the research papers coming out of this study were criticizing the ethics of this study as early as 1936. --ssd 06:33, 22 May 2004 (UTC)

Ironically, much of the medical information in the spiked-online article is directly contradicted by this study's own reports. I don't think the authors of the article have done even cursory research on the actual conclusions of the study. --ssd 00:46, 12 Nov 2004 (UTC)

[edit] Sweden's Oslo?

Sweden's Oslo Study? This surely must be a mistake. Oslo is the capital of Norway. Or am I missing something?

You appear to be right. The name there is disruptive to the sentence flow anyway, and does not add any information. All references to the study I can find call it "The Oslo Study". None refer to it as Sweden's Oslo Study or Norway's Oslo Study or even The Oslo Study in Sweden/Norway, so I am going to just remove it. --ssd 15:36, 30 December 2005 (UTC)

• • • • • Sorry, that was my mistake. here's a reference to that study (not the original paper):

Acta Derm Venereol. 1955;35(Suppl 34):3-368; Annex I-LVI. The Oslo study of untreated syphilis; an epidemiologic investigation of the natural course of the syphilitic infection based upon a re-study of the Boeck-Bruusgaard material. GJESTLAND T. PMID: 13301322 [PubMed - OLDMEDLINE for Pre1966] I'll try and stick it in User:mxpule 31st Dec 2005.

[edit] Spiked online

For reference to this discussion:

Richard A Shweder, "Tuskegee Re-examined," Spiked online (2004).[1]

"removing spiked online reference; it is a POV racisism denial source; if you want it added back, I'll add a list of mistakes in that article"User:ssd.

• Possibly...except spiked online does tend to write articles like "devil's advocates" just to stir things up - their "style". I don't think spiked is generally considered a racism denial source here in the UK. I would probably include reference in the interest of balanceUser:mxpule 2nd Jan 2006.
• I share mxpule's impression that spiked's controversial essays tend to be printed in the spirit of provoking critical thought. The author of the article suggested that it was possible that there had been a shortage of critical thinking behind the mainstream interpretation. ssd, please post your list of factual errors in the spiked article, so that we may determine if it makes some salvageable points. Thanks --Niku 05:07, 3 January 2006 (UTC)

I think all the "salvageable points" in the spiked online article were added to the article already, most shortly after the spiked online article reference appeared here. All of the points added were added from secondary (i.e., more accurate) sources. Below is my list of discrepancies between the verified facts in the wikipedia article as of this writing, and the spiked article. --ssd 07:43, 8 January 2006 (UTC)

Thanks ssd. I am working on a detailed reply. In the meanwhile, I added to the references a second publication by Dr. Susan Reverby, a "historian of nursing and medicine and professor of Women's Studies". This one is full text online.[2] It makes some points that are similar to the spiked article, it is also well referenced, and we can perhaps be somewhat confident in its credibility, since it is the 1998 winner of the Award for Excellence in Medical Communication, granted by the American Writers Association. I encourage persons watching this debate to read both the Reverby article and the Spiked article.

---

• Spiked implies that there have not been impartial debates. I'll ignore this point, it's just inflamatory, not factual.
• Spiked says the study was conducted "openly and without secrecy". I think the victims of the study would not agree with that -- they were definately not told.
• He says "Nobody was given syphilis in the study." I think the 40 wives and 19 children would not agree with that.
• I will not address the racism issues, as it is indeterminite in my eye if they were exploiting the subjects' race, poverty, or ignorance, or all three. Someone would have to read through the original reports (which I don't have access to) and attempt to read the tone of the reports to see if there was any racisim. However, the discussion of the letter included in the wikipedia article does look pretty racist to me.
• He states "the vast majority of people who have untreated syphilis either remain asymptomatic all of their lives or else spontaneously recover from the disease." This is blatently false, and early reports in the Tuskegee study itself contradict this statement. They knew it was very wrong after doing the first autopsy in the study. This statement alone tells me that the author has never read (or did not understand) any of the material surrounding the study, including the study's own conclusions. It is difficult for me to read beyond this, as the article has lost all credibility in my eyes at this point. He stresses this incorrect statement several times, and uses this to justify the continuation of the study even after 1947, so nearly all the rest of his conclusions are wrong from this one misunderstanding alone. Nobody spontaneously recovers from syphilis, and it causes chronic painful body wide symptoms for those in the latent stages.
• He uses Eunice Rivers's support of the study as justification for it. What he does not say is that she was untrained in medicine, or only trained as part of the study, and was duped into believing in it by those running the study. She had no outside training that would give her perspective on the rightness or wrongness of the study.
• He uses the excuse that "a baseline against which to evaluate the effectiveness of any therapy" was needed. However, by 1947, no such baseline was needed, and the study was never used to test the effectiveness of penicillin, which it should have if this was actually a goal of the study.
• He talks quite a bit about full disclosure and informed consent not existing at the time of the study. Do you think this justifies the deceptive nature of exhibits like the letter in the wikipedia article?
• He implies that because some of the victims of the study escaped and got treatment, that the rest were not kept in the dark. My research left me with the impression that the people who got treated had moved out of the area, and were no longer under the control of the study. To be fair, the author claims ignorance on this point.

The only point in the article I will accept is that medical treatment of syphilis was ineffective and dangerous in 1932. This barely justifies the study after 1936, and not at all after 1947.

The tone of the article seems to imply that we over reacted to the study, and that reviews of medical experiments are not needed. I think the history of dangerous studies since 1972 show that this is not the case, and that we do need high standards to prevent exploitation of patients. Even today, there are controversies surrounding under-reporting of deaths in drug tests. This tells me that abuses are continuing, despite the "over reaction" to Tuskegee. --ssd 08:57, 8 January 2006 (UTC)

I agree that the spiked article tone is off - but as I said before this is intentional in that this publication adopts a (Devil's advocate). On the otherhand, the tone of this wikipedia article is completely correct - the study is seen in its historical context. Perhaps readers can understand how a mixture of scientific single-mindedness and racial contempt led to this study going on for so long. It would be too one-dimensional to portray the investigators as Mengele type sadists secretly experimenting away - it wasn more complex than that. Regards to your last comment - as someone who has put an IND through the FDA I belive in the US and EU safeguards are more than adequate to protect patients from investigators. Ethical problems areas now are two fold - (1) Infiltration of FDA and regulatory bodies by big Pharma, lobbyists etc and (2) Dangerous new therapies will inevitably be tried and refined in the developing world e.g. korea, China and South America. user:mxpule Feb 2006.

I agree that current safeguards are sufficent; however, I suspect that a few with weak ethics in the industry and within FDA may not always be following those safeguards as much as they should. There have been too many dangerous drugs put on the market in the US in the last 5-10 years that had to be recalled later. My point is that we can not afford to relax our vigilance on this, and that people who claim the current measures are over reaction or unnecessary are either corrupt themselves or are wearing rose colored glasses and are ignorant of the dangers. --ssd

[edit] Not a secret study

The study was not kept secret, as is implied by this article. Seventeen scientific articles were continuously and openly published during the 40-year time period. One article's title read, for example, "The Tuskegee Study of Untreated Syphilis: The Thirtieth Year of Observation." Quite right. It would be nice if someone had time to burn or had this as a part of a thesis or something to include references to these papersuser:mxpule

I wrote a paper on this. I'll try to dig it up. I agree that we need more on the papers, they were published in leading journals --Notenderwiggin 02:06, 23 February 2006 (UTC)

I don't think any attempt was made to keep the study secret from the medical community. It would be interesting to see more references to the papers that were published. The real purpose of the study was, however, largely kept from those participating in it. --ssd 12:54, 10 March 2006 (UTC)