Â鶹´«Ã½

The Tuskegee Syphilis Study 50 Years Later. Why It Still Matters

Thursday, April 28, 2022
1:00PM – 1:45PM EST

It’s been 50 years since the Tuskegee Study was disclosed to the American public. In May, a new riveting account of the Study, when government doctors intentionally withheld effective therapy for syphilis for 40 years in 400 African American men, will be published in the American Journal of Respiratory and Critical Care Medicine. The article explains the deeper everlasting lessons of the study.   

Reporters are invited to a Q&A with the author of the paper on Thursday, April 28, at 1 PM ET

Author: Martin Tobin, MD, Professor of medicine at Hines VA Hospital and Loyola University Medical School in Chicago

Transcript:

Thom: Welcome everyone to today’s Â鶹´«Ã½ live event. We have with us Dr. Martin Tobin who has authored a paper coming out next week in the journal from the American Thoracic Society about the Tuskegee experiments. It was 50 years ago this year that reporting in the New York Times exposed the Tuskegee experiments, which had been happening for 40 years, on a group of unsuspecting African American men in the area of Tuskegee, Alabama. These men had contracted syphilis, and were told that they were being treated for it, while a group of researchers, including the CDC and other government offices, had sanctioned this experiment to actually not treat these people and allow their syphilis to go unchecked while they monitored and collected information about the progression of the disease. 

So that's where we are here 50 years later, and Dr. Tobin has some thoughts to share about this and some info from his upcoming paper. And I feel like the overall gist is, this is something that we need to raise awareness about so that the scientific community can ensure that it does not ever happen again. So with that, I want to turn it over to Dr. Tobin, and invite you to give a quick summary of the topic of your paper and what you feel is important for people to know about the Tuskegee experiments.

Dr. Tobin: Thank you all for participating in this. So in 1932, the major healthcare arm of the US government began the Tuskegee study. They intentionally withheld effective treatment against a life threatening illness in 400 African American men and continued to study for 40 years, because they wanted to document what happens to the body when syphilis goes on treated. 

When the study began, syphilis was one of the most feared diseases in the world, causing dreadful complications of the heart and brain and early death. Treatments existed from the 1920s. But the researchers withheld these from the men and instead gave them dummy pills, lying to the men that these were effective. 

All the men were black, but that they were desperately poor sharecroppers existing in near slavery that peonage is less well appreciated. The study was not conducted in secret. The CDC reported the dreadful complications of untreated syphilis in 15 articles published in high visibility medical journals, but not one doctor anywhere in the world, published a protest.

In 1966, a social worker wrote to the CDC, but the CDC told him that the study was too important for science to stop it. After being rebuffed repeatedly across six and a half years, the social worker finally reached a journalist and the story broke on the front page of The New York Times - the American public was horrified, and Congress introduced regulations for conducting medical research. 

As with any catastrophe, we owe it to the Tuskegee men, that we never forget the ordeal they endured, and the 50th anniversary of the uncovering of this study is a time of special memory. That's it.

Thom: Thank you, Dr. Tobin. For everyone, Dr. Tobin is professor of medicine at the Hines VA hospital at Loyola University med school in Chicago and he's also working with the American Thoracic Society to publish his paper in the American Journal of respiratory and Critical Care Medicine. And that should be out next week. 

Dr. Tobin, can you tell us a little bit more about what your recommendations are to ensure that something like this never happens again?

Dr. Tobin: The government have implemented various regulations to regulate different aspects of research, such as IRB’ institutional review boards and informed consent. These regulations are necessary, but they're not sufficient. The crucial lesson from the Tuskegee study is that the conscience of the researcher is far more important than all the regulations in the world. So medical researchers need to look at the Tuskegee study and see how they might be corralled into acting like the junior researchers on the Tuskegee study, who provided the driving energy for the study across its 40 years and to make sure that they are not part of a similar unethical operation. I mean, for the general public, it's difficult for the public to know what research studies are ongoing, they only become aware of studies after they're published. And if then they see something that they consider problematic, they can contact the researchers themselves, or their supervisors would be a dean in the medical school. And if that fails, then to contact journalists or members of Congress. There is also a number of non-profit advocacy groups like Public Citizen that the public could contact.

Thom: Are there any reports or history about this, that there were any attempted whistle-blowers that were rebuffed during this?

Dr. Tobin: There really wasn't a whistle-blower,  the key one was Peter Buxton, who was the social worker, I mean, a whistle-blower kind of goes above the investigator and contacts supervisors, he went directly to the people. And he was going to the leadership within the CDC, he went directly to the Director of the CDC, and the Director of the CDC replied back to him and they brought in a panel of 17 outside experts. And they said, this is far too important for science. We can't stop this. They were able to persuade themselves that it was too important. And so in a sense, he was not a whistle-blower in the usual sense, because he's facing them head on.

Thom: Members of the media, please think of any questions that you have. You're welcome to chat, in the chat that you have a question. We can invite you to get on audio and or video and ask the question yourself, or if you put the question into the chat, I can ask it for you.

Dr. Tobin, this history of Tuskegee, I have a sense that and maybe you know, some more details about this, that a lot of this has been forgotten by the American public, if it was ever truly known in significant detail to begin with - what are your thoughts about the awareness of this? What can we do to increase that awareness? And what kinds of things about this are you concerned that the American public, maybe never even was really fully made aware of, or has forgotten in the 50 years since?

Dr. Tobin: I mean, I suspect that there was considerable awareness when it broke 50 years ago, when it was on the front page of The New York Times and it was covered in all the media at that time. But there was a survey done kind of, of the American public - a pretty large survey about 10 years ago. And basically, it highlights that people know next to nothing about it. 90% of people who are surveyed didn't even know it was being carried out by the US government. They didn't know that basically that it extended over 40 years, the vast majority - about 90%, again, didn't know that. And they thought that it had stopped when Penicillin was introduced. They didn't know that the study went on for 20 years after that. So basically, the American public has very poor understanding of it. And the thing is, that for any catastrophe that happens, I mean, the citizens of a country need to remember a catastrophe. People remember what happened in 9/11. Every year it's recognized and that this is something that people need to remember. But the men in Tuskegee suffered a major injury and to forget the injury that they suffered is adding another layer of injury to them. So we owe it to them to be able to remember what happened to these people.

Thom: We have a question from Dan, at BuzzFeed. 

Dan: All right, I have sort of a two part or two questions actually. One is springing off what you just said there. Do you have any reaction to the way we've written about Tuskegee during the pandemic, there's been a lot of references to it, to explain hesitancy in the African American community to get a vaccine or otherwise you know, get treatment, that sort of thing. But you know, you seem to be saying that nobody remembers it, actually. So how much credence should we give to like that as an explanation, you know, which is always an inevitable paragraph in stories,

Dr. Tobin: I've seen lots of reports about Tuskegee. But these reports are largely anecdotal in newspapers, and people say, well, the Tuskegee could be accounting for vaccine hesitancy. I have not seen any actual kind of sociological studies on that even before Covid, saying that it Tuskegee was explaining reluctancy before that, and you'd have to doubt it, if the vast majority of you know- basically, they have very little memory of it. So I would think it's possible, maybe it is, maybe people are remembering it differently now than they did before Covid. But clearly, I've seen no evidence that that is the case.

Thom: Is it something that you think maybe seeps into the culture as a general sense of distrust of government in terms of medical experimentation, particularly among minority communities? Even if they don't recall the exact details of it?

Dr. Tobin: That's possible, And certainly, that would be a different type of research question. I mean, that would be very useful to ask and to do a study at that, but I haven't, again, you'll see lots and lots of stuff, kind of in social media, men linking Tuskegee to this. But it's a different thing - you can suspect that's happening. But it's a different thing to actually get data that shows that there is an association. And the fact that people have such limited knowledge of it makes - gives you pause for concluding that.

Dan: Thanks very much. The second question is about your observation that it's really the researchers conscience is the guardrail here, and not so much the mechanism of IRBs and so forth. I mean, could you expand on that a little bit like what this tells you? Because I mean, there are people complaining that things like challenge trials could have been tried in the pandemic, but the system of IRBs, and so forth, prevented that from ever being realistic, is all that machinery unnecessary? You know, if it's really just the conscience of the researchers here, would this happen again regardless of that, or what do you make of the modern machinery to try and prevent this kind of thing? Thank you.

Dr. Tobin: Right. So I mean, the machinery is largely in terms of informed consent and institutional review reports. And I believe that these are necessary. The conscience on its own is not enough. But you need both of them. But people focus on the IRBs, and informed consent, and they kind of feel well, this could never happen again. And when dreadful things happen, generally, the leadership of NIH and CDC, as happened with Guatemala, which was as close as 10 years ago, they immediately tend to come out and say, this could never happen again, we have all kinds of precautions in there. I don't believe that that's the case. I mean, you need the precautions, all the precautions need to be there. But in addition to that, the primary message is that for the researchers themselves, that you have - because I've been doing research for over 45 years directly on patients, and you have to ask yourself, Is this study truly ethical - that's the crucial part. And that did not happen in Tuskegee, the only person who was troubled about the ethics was the social worker.

Thom: Thank you, Dr. Tobin. And Dan says, thank you as well in the chat. 

Do any other members of the media on the call, have questions about this? Please feel free to chat or use the raise hand option. 

Dr. Tobin, what resources are there for scientists that would like to raise an ethical concern? And what would you like for the public and as well, science writers like the ones on the call with us to know about that, so that that could be something that works its way into rebuilding more awareness along with the recommendation - if you're a scientist that has a concern about something, where do they go?

Dr. Tobin: So I mean, obviously, if somebody is involved in research, and they believe that the research they're involved in is unethical, they have a moral obligation to pursue that because otherwise patients are going to get damaged. But it's quite a process. 

So I mean, You'd need to begin by making sure that actually you may have a suspicion that this is unethical, then you need to kind of feel that you have good grounds for thinking that. So probably the best thing to do at an early stage is to talk to a colleague that you trust. And you can kind of flush it out with that colleague and say, This is what is disturbing me. And then I mean, the typical process is that if you're suspecting something, then you go to the dean of the institution, you go to one of  the leadership of the institution, and you raise questions about it. If you feel that you're at risk by going within the institution itself, you can go to the - there's a particular office within the NIH, it's called the Office of the Ombudsman - and as soon as you put whistle-blower, and NIH into Google, it will give you information on that. And so you could you can go to that particular office and be guaranteed of anonymity, there'll be no problems, and then you can pursue it. 

So there's clear processes that are available if you are worried about this. But, again, in terms of whistleblowing, I mean, I have no particular expertise on this, but that I know those processes operate from the time when I was a journal editor, that I knew about.

Thom: During the process of these 40 years of studies, I remember that there was some sort of review by a so called Blue Ribbon Panel. And they even under the guise of reviewing things, allowed it to continue further. Can you tell us more about what that process was like and why that failed to intervene at the time? 

Dr. Tobin: Right. So I mean, this study begins in 1932. The Blue Ribbon Panel is very late. It's in 1969. So the study has been going on for 37 years at this point. And the CDC was concerned, this was after they had been contacted by the social worker, they knew they had a problem. But they got 17, non-CDC doctors to come in and review everything, there was one person on that panel, just one who said this is problematic, and these men need to be treated, but the other 16 on the panel weighed in behind the CDC, and they persuaded themselves, we can't stop this - it's always possible to come up with explanations for something like this, that you persuade yourself. It's probably more trouble if we try and change things. So one of the things they came up with in that is they said that if we give Penicillin, there could be complications from that, there's a particular reaction that you would get called the Horkheimer reaction. And so they said, Well, it's too risky to give penicillin and so it's much more important that we keep doing this, and we keep these men untreated. But subsequently, when the study ended, the men were treated with penicillin, and not one of them developed any complication. 

So I mean, these are kind of the explanations that people go through in persuading themselves. That bad stuff - it's better to keep doing it. It's going to cause more trouble if we stop. But I mean, that's, unfortunately, it's a very human reaction. And here is a perfect example of how damaging it is.

Thom: So in the aftermath of this report, we now have processes involved where subjects volunteering for studies and trials undergo various processes with informed consent or signing waivers and things like that. What are your thoughts about how that process has gone since 1972? Is it effective today? And what is the general sense of what else might be needed for informed consent to be a success?

Dr. Tobin: I mean, all of these processes, we owe all of this to the 400 men - all of the rules and regulations that we have today are really a consequence of what happened to the 400 men in Tuskegee, so they bare the credit for what has happened. 

Those regulations are important, they're essential. But they're never going to be able to prevent something, they markedly lessen the likelihood of dreadful things happening again. But it is naive to think that something dreadful wouldn't happen again, it's almost like a belief in Santa Claus to think that it can't happen again. And we can't be that naive. 

But I believe the regulations we have are good, I don't see ways of necessarily improving them. But those regulations will never be able to compensate from a non-ethical researcher. That is the key thing is that you have the people who do research, that they ask themselves questions, because there was a huge number of different doctors involved in the Tuskegee study over 40 years. And so these people all just fell in with everything else. They didn't ask any questions. And they, saw this is the way things are done, and they just blindlessly follow everybody else. And that is the real lesson. And that is a huge problem in medical research.

Thom: We have a question in the chat from Simone Lindsey, asking what happened to those 400 Men, after news of the study was published.

Dr. Tobin: So after the study was published, first of all then the government had a panel that advised on it. So that spent a few months and then the panel advised that this study needs to be totally stopped, that nothing further, no further research on this should be conducted and then that the men should be treated. And so the men were treated, then separately from that, an attorney in the locality, Fred Gray, he sued the government, he sued the doctors, he sued various people. And that case settled out of court. And then each of the men who were part of the study who are still alive, because a number of men died, they had died from the untreated syphilis, quite a number of them died. It's difficult to get statistics on the number that died. But it's somewhere between 30 and 100, died directly of being included in this study. And so then, once that lawsuit was settled, the men got 37,000 each. 

Thom: Over that long of a time. It stands to reason that the disease progression, especially for those maybe that had contracted it very early on in this time period. People may know some about the ravages of syphilis as it progresses. My guess and my question for you is - some of those men, I'm guessing it was too late to treat for a lot of the complications that can occur from a disease like this – even if they hadn't died by that point. There were just unreversible things by that point, weren't there?

Dr. Tobin: Of course. And I mean, obviously, the additional tragedy here is that all of these ravages were reported out in the open. This was not a secret study, people would think something like this is a secret study, but it's not. So one of the real embarrassing things for the entire medical profession is that these ravages were reported in 15 papers in high visibility medical journals, and not one doctor anywhere, wrote an article in protest. So it's not just American doctors. It's not just the CDC, this applies to the medical profession around the world. And so in these articles, even if you don't read the entire article, just the title of the article is telling you how horrendous it is - because it's saying that this is a study about untreated syphilis. And then they're telling you about the increased mortality that occurs in these men. And then they're showing you the dreadful complications that happen to the heart and the brain and all these things, incurring severe damage. And again, we don't think of syphilis today as being a big thing because we know it responds very well to antibiotics. That was not the case when the study was beginning. It was one of the most feared diseases that were known in medicine. And so it went on and so the ramifications of this, particularly for the entire medical profession are enormous.

Thom: Any other attendees have questions for Dr. Tobin. We will be able to share the recording of today's event. Again, we'll have that going out to everybody over email early tomorrow morning. We also would be happy to share the contact information for the communications person at the ATS, Dacia Morris, who's helped us to arrange this today with Dr. Tobin. The ATS also has their annual meeting coming up. So if you're interested in any other news from the American Thoracic Society, coming up at their annual meeting, that may also be something of interest and thought I'd mention it. Dacia if you want to chat your contact info in the chat so that anybody could follow up with you if they'd like to ask further questions of Dr. Tobin or if possible, get a copy of the paper when it comes out. 

If anyone else has questions, please feel free to chat them. 

Dr. Tobin, we're kind of maybe getting to a conclusion here. What are some of the next steps that you'd like to see as a result of your paper? And a question in the chat coming up - Are there any studies ongoing today that might be inappropriate in some way that there needs to be something addressed?

Dr. Tobin: I mean, there's always studies and you have to be on the watch out. I mean, obviously, we don't know what's around the corner. We never know that. But I mean, there's a big study that happened maybe a little more than 10 years ago, which was at the time of when HIV, there was a study done, again, by the NIH with full support from the CDC, where you had pregnant women in Africa, who were - it was known that ACT, one particular agent, that effective for HIV, prevented the transmission to the new-born infants, but the problem was, this was extremely expensive. And so they said, this would be too expensive for most of the resource poor countries. And then they initiated a study with short course, AZT, and then in the other group, they had women with placebo. And so this is really very similar to what happened in Tuskegee, and this was happening relatively recently. And again, when that happened, there was a lot of controversy, and there was a lot of people defending that particular study. So it's never going to be the case that unethical studies are going to go away, I don't believe that is realistic. Instead, you have to be alert to them, and be on the lookout. I mean, fortunately, the vast majority of studies are perfectly ethical. We need studies. I mean, I've spent my life doing medical research for 45 years, this is vitally important. But it's also very important to identify when stuff goes wrong, that you're aware of it, and you can't be blind to this, and the Tuskegee study, is one the most one of the major ones because everything that you need to know about ethics in research really is carried in the Tuskegee study. If you kind of understand what happened here, you're able to see all the problems of it. And it's the best way of understanding research ethics.

Thom: Thank you, Dr. Tobin. If, if I can ask one more question here. Again, in the chat from Simone, what should people do as a precaution, if they want to participate in a research study? For example, there are many clinical trials done for cancer research. How can someone be sure it's okay. And when we were speaking the other day, Dr. Tobin, you refer to people's eagerness to participate and contribute even when they have horrible terminal illnesses and things like that. So what should patients in an example like Simone mentions, be thinking about in terms of the safety of any kind of study that they participate in and what is important to respect about their willingness to participate?

Dr. Tobin: I think the main thing is that you have a frank discussion with the researchers you talk to them and find out and if you're uncomfortable, if you feel they're hiding something, well, that's a huge signal. But I mean, again, in my experience is that you never need to lie to patients in terms of getting them involved in research studies. To me it's always that  - my experience is that patients are extremely disappointed when you don't didn't enrol them. I have people that have to swallow oesophageal balloons, then we zap them electrically in the neck, it’s a jolt – but again they will come back the following day and then you tell them – you're not going to get paid for doing this and also that its probably not going to benefit you personally but that we hope that the information will benefit other people. And patients are extremely eager to be involved in this cause they feel this is something – when they're in hospital or wherever else, they're saying well I'm benefitting from medical knowledge and we always need research, if we don’t have research – we’re going to go backwards. So this is – its vital that we have research and again the main way is by open transparency, discussing all of this with the investigators and if you feel its trustworthy then I think it’s extremely valuable, because again I think even patients feel better about themselves if they're involved in research – they're able to see – yeah this illness that I have is bad but this is something I'm able to turn positive from the illness.

Thom: Thank you Dr. Tobin – if there are no other questions we’ll go ahead and wrap things up, I've chatted to everyone the contact info for Dacia at the ATS – please shoot her an email if you want to ask for any more info or further questions for Dr. Tobin, and stay tuned for the copy of this video going out by email tomorrow morning, and please let us know here at Â鶹´«Ã½ if you have any questions to need help with anything anytime – with that Dr. Tobin thank you so much for joining, once again for everyone – Dr. Tobin he is a Professor of medicine at the Hines VA Hospital at Loyola University Medical school in Chicago, and his paper will be coming out next week in the American Journal of Respiratory and critical care medicine, thank you Dr. Tobin for informing us more about Tuskegee and I can say – I think we all agree this is something we hope that never happens again and we advocate here at Â鶹´«Ã½ for more transparency and ethics and research so this is obviously a very important topic. Thank you Dr. Tobin and best of luck with your paper.

Dr. Tobin: Thank you very much Thom, you’ve been very helpful I appreciate it.

Thom: Thank you everyone, have a great rest of your day, stay save, stay healthy and good luck.