Ethical Violations in the Tuskegee Study

[Music] tonight unknown were these men sacrificed to science men were being taken advantage of by the federal government this was not some mad scientist in the basement doing this it was public information lives were lost but the experiments continued it was racially motivated it was racially conceived correspondent george strait travels to alabama to find out the truth behind the deadly deception funding for nova is provided by lockheed america's aerospace company supporting math science and engineering education for national technology leadership and johnson and johnson the signature recognized around the world for commitment to quality health care products for the entire family major funding for nova is provided by the corporation for public broadcasting and by the financial support of viewers like you herman shaw just short of 90 has lived all his years in alabama [Music] today is a momentous one for sean and for his friend and neighbor charles pollard [Music] they are headed to montgomery the state capitol to be honored guests at a special performance of the alabama shakespeare festival the play they have come to see miss evers boys is a fictionalized account of a notorious medical experiment known as the tuskegee study in this experiment government doctors promised black men in alabama free treatment for syphilis a disease sometimes called bad in blood it's sending down the best medicine to treat anybody in this county who needs it even if you're poor if you got bad blood you'll get a chance to be treated now that's nothing that's what i drove and tell in fact the government doctors withheld treatment they were interested in studying syphilis not in curing it herman shaw and carter howard price johnson and charles pollard are survivors of the experiment but hundreds of lives were gambled and dozens of lives were lost in many ways these men's lives didn't count these were poor black sharecroppers in macon county alabama and they were in many ways expendable the tuskegee study has been grossly uh misunderstood and misrepresented this way and the fact was that it was concern for the black community trying to set the stage for the best uh public health approach possible in best therapy that led to the study being carried out [Music] what is the truth behind this study i'm george strait and i've come here to make in county alabama where it all took place to try to find out the experiment was called the tuskegee study of untreated syphilis in the negro male it was authorized by the u.s public health service paid for with taxpayers dollars and conducted by government doctors now the aim was to learn more about how syphilis this deadly and debilitating disease actually attacks the body the method was to withhold treatment from 400 men all poor all black and all deceived by the promise of care now the medical establishment has never denied the facts of this tragedy which for many has come to symbolize medical misconduct and a disregard for human rights in the name of science but the question remains how could this experiment have happened you've got to go back senator to appreciate making county alabama in 1932 to understand what karen met in those times you've got to think like we thought then you're talking about civil rights i'm talking about people just trying to stay alive macon county alabama sits in the heart of the deep south and in many ways this is still the old south over 80 percent of the people who live here are black and many like herman shaw are just two or three generations from slavery [Music] when shaw was a young man in the 1920s most black men and women work the unforgiving fields of alabama as sharecroppers or tenant farmers for white [Music] on landowners come on that's a man okay good boy [Music] then as now this was a poor county in one of the poorest states in the nation and as in all poor places the people here were oppressed by the ravages of ill health macon county was a poor county there were people there who were sharecroppers and they could not afford health care so that you had high incidences of infant mortality you had high incidences of syphilis you had high incidences of other diseases so it was not a very healthy county but there was mounting attention to the health needs here you see a lot of public health writing at the turn of century talking about germs no no color line so that you had to take care of the health needs of black people or they were going to infect white people and while there were many health problems facing the citizens of macon county in the 1920s and 30s here and throughout the nation it was syphilis that aroused people's fears it would have been enormously frightening to have the diagnosis of syphilis for really two reasons one because of the many many symptoms and terrifying consequences that syphilis truly does have and secondly because there had been so much attention to syphilis and the creation of what people called cyphalophobia people thought it was everywhere and people were horrified to learn that they might be infected and it was so highly stigmatized because of its association with illicit sexual behavior now that the curtain of secrecy has at last been removed everyone should know the truth about syphilis and gonorrhea syphilis is spread by intimate contacts usually sexual the cause of syphilis can be seen by the 1920s scientists had established that this tiny organism a spirochete can live in the body for years or decades they knew that syphilis could cause a life sentence of illness blindness heart disease crippling arthritis and often premature death but there were treatments toxic arsenic mercury and bismuth compounds injected over more than a year would attack the spirochetes in most cases the treatments would render the disease non-infectious and prevent its worst damage with widespread knowledge and with these weapons america can conquer in one generation [Music] this was a disease that really was the epitome of what modern medicine was about you could find the cause you could find out whether somebody was infected and you could treat them effectively so this created enormous attention to syphilis in the 1920s and the 1930s because public health officials said here's a disease that we can really effectively address the u.s public health service was run by idealistic physician scientists they were eager to use the combined weapons of germ theory sanitation basic research and public education to fight and conquer disease syphilis with more than 300 000 new cases every year was an early target as part of this campaign the public health service launched six pilot projects in the south in predominantly poor black communities these efforts were partially supported by state and philanthropic funds one project was in macon county alabama in 1930 government doctors arrived with high hopes and an ambitious plan to diagnose and treat as many as 10 000 people effective therapy would require an arduous and sometimes painful course of treatment with toxic compounds administered over a year and a half initial blood testing revealed an epidemic rate of syphilis in macon county 35 of the black men and women here were infected but the public health service had underestimated the costs of providing treatment to so many and they hadn't counted on the great depression lasting so long by the end of 1931 there was not enough money to continue the program of the thousands infected the public health service had treated only fourteen hundred and of these many did not receive the full course of therapy the government doctors pulled out leaving the men and women here to the mercy of the disease but this was not to be the end of the makin county syphilis project back in washington public health service officials were anxious to salvage some scientific benefit from the abandoned program the head of the vd division talifer clark had a plan if there was not enough money for a costly treatment campaign perhaps there were funds for less expensive research he proposed macon county is the ideal site for a six-month study of untreated syphilis clark wrote macon county is a natural laboratory already made situation the rather low intelligence of the negro population depressed economic conditions and the very common promiscuous sex relations not only contribute to the spread of syphilis but also to the prevailing indifference with regard to treatment clark proposed to investigate whether syphilis was the same disease in blacks and in whites the question emerged from theories that there were fundamental genetic and physical differences between the races when you look at many of the medical writings at the turn of the century especially those of white physicians and nurses and public health experts the focus is on genetics that somehow it was in that black people were inherently specific that black people were inherently tuberculous that black people had smaller brains and because they had smaller brains they couldn't control their lust they were immoral there was also a widely held belief that syphilis in blacks was not a deadly disease clark hoped that debunking this would free up new funds for treatment programs he knew he needed local help to implement his plan and he turned to macon county's brightest light the tuskegee institute founded by booker t washington to educate freed slaves and their descendants the school had garnered the trust of the local community and the respect of the nation tuskegee was committed to the health needs of blacks and had a well-equipped hospital laboratories and a highly trained medical staff all the facilities needed for a research study and here was a major research project an unparalleled scientific opportunity at least that's the way the designers of the experiment described it for its part the school had long depended on the moral support and financial backing of the federal government so when the public health service came asking for help it was difficult to say no in the autumn of 1932 the university agreed to collaborate and the syphilis treatment program was transformed into a scientific study designed to collect data and the men of macon county were changed unwittingly from patients to experimental subjects no voice was raised in protest no questions asked about the welfare or the rights of the men for the greater part of the 20th century we assume that what physicians and scientists were doing was morally responsible and conscientious and we didn't really ask about it [Music] possible death or liberty this is the risk 10 convicts are volunteering to take in the fight against sleeping sickness we're doing this for the sake of humanity in the 30s there were no regulations to ensure that subjects were fully informed about experiments or protected from unnecessary risks this study was designed to investigate sleeping sickness the test begins in glass tubes with gauze at the ends are mosquitoes which were fed on victims of the saint louis epidemic will their bite affect these men that is science's question can you feel them yes ma'am research subjects will most likely come from those who are in some ways not only medically disadvantaged but socially disadvantaged in one way or another and therefore the burden of human experimentation historically has often rested on those who are in some manner least able to protect themselves from from this kind of investigation in the macon county experiment the subjects were found through the two institutions they trusted most church and school herman shaw heard about a chance to become a special government patient the way i heard about it was through a rumor that uh the people that came out of macon county people said that you could get free medicine for yourself and things of that kind and they would have a meeting at salmon chapel at a certain date and those of us were eligible was of a certain age but then when there had to be a certain age to be able to participate in this meeting therefore i went well that's that afternoon when we went over there but then they said that we'd get free medicine wouldn't cost us anything and a doctor would get free doctrine the doctors said they had come to cure bad blood when you first started up you see i didn't know nothing just a country boy it's to say when they got down here in alabama they found what they wanted he just went to doctoring on us and and said he's gonna treat us they just said bad blood bad blood was a euphemism it could have meant syphilis it could have been tired blood so that bad blood meant lots of different things it was not what one would call a very concise term but the point is the men were told that they had something wrong with them and that they were being treated for their bad blood with promises of free treatment for bad blood the doctors recruited 400 men never before treated and now in the later stages of syphilis much was already known about the natural history of this disease syphilis is most contagious in the first weeks and months and is spread sexually and congenitally from mother to fetus in its early stages rashes headaches fevers and pain are common then syphilis enters a symptomless latency period which lasts for months to decades and for a lucky minority never ends but for the majority there will be a relapse the violent storm of late syphilis now the disease attacks the brain internal organs and joints of its most unfortunate victims [Music] as the tuskegee study began the government doctors catalogued the effects of latent and late syphilis they conducted blood tests detailed physical exams and x-rays and there was one more test they wanted a purely diagnostic spinal tap to determine the prevalence of neurological syphilis i'm going to locate that spot between the vertebrae in your lower back and make a small needle puncture there to withdraw some fluid not much to it really good bend your head over further further i said good good now you're going to have to sit very still the sevens will help you especially once that needle is inside your spinal canal don't move or that needle might injure the nerves in your legs to my legs that's right that's why we don't want you to move don't worry i'm not moving all right here we go you going too far i have to try to climb this final canal all right here we go all right we're pretty bad that's final tap because i did alone pretty good with it but uh and uh i stayed in the beer a week or two this letter sent to each man before his spinal tap claimed it was a very special free treatment some time ago you were given a thorough examination and since that time we hope you have gotten a great deal of treatment for bad blood you will now be given your last chance to get a second examination this examination is a very special one and after it is finished you will be given a special special treatment if it is if it is believed you are in a condition to stand at remember this is your last chance for a special free treatment the men were told that the spinal taps were a treatment that shows you some of the deception and deceit involved in the study and these are physicians saying this so that it has a certain power and authority a physician saying this men from this community were told that the government doctors had come to help them they were never informed of the real purpose of the research project they were never told the true nature of their illness nor the dangers they faced according to the original proposal the tuskegee study was to be finished at the end of six months instead it was just beginning government doctors became fascinated by the early data they saw indications that blacks suffered the same complications from syphilis as whites that was exciting because it contradicted the prevailing wisdom that somehow syphilis was different and less deadly among blacks the investigators convinced themselves that their research could answer other more general questions as well in their mind they thought they could break new scientific ground in the study of syphilis their excitement propelled them forward as the tuskegee study was poised to make its most fateful turn raymond vondelaire a young field officer now played a critical role particularly enthralled by the science and blatantly unconcerned for the welfare of the men he pushed to extend this study into a long-term open-ended research project soon vandalia was promoted to the head of the vd division and had the power himself to implement his plan now preparing for the long-term study the public health service hired a tuskegee nurse eunice rivers the inspiration for miss evers in the play rivers was to become the main liaison between macon county and washington driving the back roads of rural alabama to monitor the subjects and tend to their minor complaints she traveled to country fairs and churches and schools to maintain contact with the men and their families she also helped to recruit a group of controls 200 men free of the disease but river's main responsibility was to gather the study participants for the now annual roundups when the government doctors came to town on each subject they performed physicals and blood tests and to maintain the appearance of treatment the doctors gave the men placebos vitamins aspirins and tonics all useless against syphilis we got three different types of medicine we got a round peel and sometimes they give us a capsule and then they would give a little vial of liquid medicine everybody got the same thing these were men who weren't going to question the system who weren't going to question the government doctors who weren't going to be out there picketing and writing and protesting about it these were men in macon county alabama who's going to speak for them in the 1930s throughout the south legally enforced segregation maintained a system of racial hierarchy black people were expected to live in deference to white authority when some of the men of the study were ordered by their employers to go for blood testing they had little choice but to comply the public health service continued to rely upon that authority in miss evers boys the nurse is based on eunice rivers and the character of dr douglas represents vandalia and the medical establishment to treat these men by mistake this is the decision washington has made this study must go to end point and how far is that autopsy autopsy the facts in this study must be validated by autopsy we're so close and the public health service wasn't above a bit of bribery those men need our help don't they of course they do would fifty dollars be account for those men fifty dollars is a lot of money in making county dr douglas um would uh fifty dollars life insurance convince those men to stay with this study life insurance for berry a decent bearer would mean a lot to those men they're buried in feed sex by the city dump as long as this study continues any study patient who dies for whatever reason receives fifty dollars life insurance washington would do that nurse ever as if it would help in the earlier years they gave even less my father-in-law was in the study and he died early and they gave him 35 dollars in a barrel and then that was almost very important in those days in fact it would put you give it give your casket pretty decent barrel in exchange bodies were taken to a local hospital for postmortems tuskegee nurse mary harper assisted we were to start off you know with the the autopsy and dr pierce was saying my god it is interesting for when we saw a great deal of the the spread and the devastating effect that the syphilis had had on on the body he was saying uh you know what mary pulled the clinical record for this particular patient and we want to see to what extent does his clinical manifestation match uh the amount of pathology that we had found in the body that was the thing that was very very interesting as the records indicate the autopsies sometimes revealed even more damage inside the bodies than had been expected from previous physical exams once you start looking down in those bar in that body and looking at the various organs and the effects that it had then you know it is a very very devastating illness the very first autopsy was performed at the end of 1933. over the years many deaths were to follow this one each dutifully noted in government reports and scientific papers the tuskegee study was almost never a secret from its very inception and one of the most interesting and difficult aspects to account for it is the fact that periodically starting in 1936 and then on a fairly regular basis the results of the study's findings were reported in major medical journals in the early years the findings were sometimes also reported to congress but no one inside the medical establishment or government questioned the merits of the study this was not some mad scientist in the basement doing this that it was public information and i think people did not raise issues about it because they didn't see anything wrong with it the medical profession did not see anything wrong with it [Music] the first article was published in 1936 in the journal of the american medical association the researchers reported that of their 400 subjects 75 suffered some complications of late syphilis half showed cardiovascular damage and a third had neurological symptoms the scientists continued to find the data intriguing and they watched and waited to see what would happen next to the men of the study [Applause] [Music] by 1937 conditions in macon county were looking up during a new deal sweep through the south fdr brought his message of hope to tuskegee we're realizing more and more that it's a great privilege to be alive somebody said it's grand no matter how old you get to want to keep on living because there's still so much to be done [Applause] as part of the program of national recovery the government reasserted its public health initiatives [Music] the public health service launched a revived nationwide campaign to combat the syphilis epidemic it was run by the principal architect of the tuskegee study raymond vondelier the physician who accepts for treatment a patient with syphilis assumes a very definite public obligation when you accept a patient you should likewise accept the responsibility of assuring yourself that he completes the treatment schedule by 1938 there was a national venereal disease control act and throughout the nation including alabama the public health service pushed for syphilis treatment programs but not for the men of tuskegee they were systematically excluded and if they sought out help they were tracked down and stopped this happened to herman shaw when he went to birmingham alabama for treatment when i got there i saw a nurse pacing through the camp somebody she was disturbed and thinking she'd been looking for someone that wasn't supposed to be there there are two patients in this treatment clinic who do not belong here is there a man here named willie johnson is there a man here named caleb humphreys yes i'm over here you wearing a new hat what are you doing here willy johnson see what are you doing up here i said well they told me i had to come up here they sure you got to go to birmingham so did you come here come here that doctor did not know you were a government patient if that doctor had known that he wouldn't have sent you here and you get back on that bus to tuskegee and they gave me breakfast and put me on the bus and send me back the thought i said you didn't supposed to be so you and megan county clinic one of the remarkable aspects of the study was the lengths to which the public health service went to ensure that the men never received treatment and when some of the men by their own design were able to obtain treatment this was perceived by the researchers as abrogating the study the world was changing spurred on by the second world war but single-mindedly the researchers ignored or circumvented each change that threatened their study after 1941 millions of americans were swept into the armed forces all of them were tested for disease and those infected with syphilis were ordered to treatment but in tuskegee the scientists running the study appealed to the draft board to exclude their subjects from military service so their syphilis would remain untreated study subject charles pollard however was inducted into another type of service when the u.s government asked him to appear in this film to promote black support for the war effort he agreed pollard and his wife played the proud parents of an army pilot a member of the famed tuskegee airmen [Music] charles pollard was eligible for the draft during the war but he was never called to duty to the u.s government he and the other men of the study had their own special status [Music] as the war raised the stakes the public health service escalated its campaign to rouse the national will against syphilis [Music] this wartime propaganda took on a decidedly moralistic tone search out the places that infect the city protect its people the places with the easy pickups this is where syphilis must be fought search out the people to the people who carry the disease and soon these campaigns were fortified by a revolutionary medical breakthrough the war period saw the rise of a wonder drug penicillin recognition that penicillin effectively treated syphilis had remarkable implications immediately during the war for the treatment of syphilis among american troops but beyond that was kind of a marker that in fact perhaps there would be magic bullets by now john heller had replaced vondelaire as the director of the tuskegee study more than 200 000 new infections of syphilis are acquired in this country each year all are actually or potentially highly infectious on the basis of present evidence penicillin appears to have great value in the treatment of syphilis in virtually all stages and manifestations whatever the future may hold for penicillin therapy we physicians already have in our hands weapons which with proper medical usage should enable us to reduce materially the amount of venereal disease in the united states while promoting penicillin for the nation heller continued the policy of denying treatment to the men in macon county in 1947 he published the latest findings from the study in the journal of venereal disease information the life expectancy of a negro man between 25 and 50 who is infected with syphilis and receives no treatment is reduced by about 20 percent the fact that nearly twice as large a proportion of the syphilitic individuals as of the control group has died is a very striking one even with undisputed evidence that men were dying no penicillin was offered one of the few surviving public health service doctors who worked on the study still defends that decision john cutler it was important they were supposedly untreated and it would be undesirable to go ahead and use large amounts of penicillin to treat another disease because you'd interfere with the study the fact that the men are denied penicillin simply reaffirms how determined the public health service is to keep this experiment going i don't see it as a new issue having decided to withhold the treatment of choice in the 1930s treatment that doctors in the 1930s said was good treatment i don't think that there'd be any ethical dilemma for withholding penicillin when that presents itself it already crossed that bridge [Music] if the ethics of the study had ever been unclear the events of 1947 should have brought them into sharp focus second trials the american military tribunal hearing evidence against 23 of the leading nazi doctors the nuremberg tribunals uncovered amid the perverse horrors of the nazi regime gross examples of human experimentation in the name of medical science the trial of these nazi doctors led the international community to formulate the nuremberg code for the protection of human subjects its first and central principle was informed consent subjects must voluntarily agree to be part of any experiment and must be fully aware of all risks the scientists of the tuskegee study including director john heller dismissed the relevance of nuremberg i asked him specifically about nuremberg and whether that gave him any pause and he said absolutely not i asked him if whether he ever drew any associations between what they were doing and what the nazis had done and he said certainly not and then he uh he looked at me with a kind of wounded innocence and said they were nazis the nazi concentration at camp experiments because of their fiendish nature were seen as an aberration as something [Music] that could not happen anywhere else in the civilized world and therefore it was relegated into a special category but there were important lessons to be learned from nuremberg and those lessons were not learned and so the government doctors and nurse rivers continued their roadside roundups to observe but not treat the ever fewer survivors despite the many changes around them the national campaign to treat syphilis the advent of penicillin the horrors exposed at nuremberg the researchers pushed on undeterred and soon there was yet another development to ignore it is ironic that in this county where so much emphasis was being placed upon civil rights and the right to vote that there could be a a situation occurring that most people did not realize uh where african american rule county underprivileged a very little educated men were being taken advantage of by the federal government in the mid 50s fred gray was an attorney for martin luther king at the center of the civil rights movement that exploded just 40 miles from tuskegee in montgomery alabama i don't even believe that the persons who started the study would have even considered using white persons instead of black it was racially motivated it was racially conceived they found here a pocket of blacks who the nation really would care little or nothing about during the turbulent years of the civil rights movement in alabama the study went on the scientists continued to ignore this new force that shook the world around them instead they watched and they waited to see what would happen next to the men of the study a decade later in the mid 60s the civil rights movement was in its prime and the tuskegee study was almost 40 years old the study was now managed by the centers for disease control an agency of the public health service and here the first rumblings of concern began a young epidemiologist learned about the study and tried to have it exposed we collected the studies put them in a package and sent them to the washington post in the um new york times and so on and uh waited for the major break to come well of course it never came we were fairly naive about um how the media worked um i think now we would know that we should have written the press release and we should have you know had the contact and we should have followed up and all that sort of stuff but at this point we thought all we had to do was tell america that something was wrong here and um everything would be all right and everybody would understand and everything was not all right not everybody understood and nothing was done across the country in san francisco the story took another critical turn peter buxton was a public health service vd worker one day in the coffee room at work an older associate was telling a story of a man with insanity a black man who was rushed by his family to a physician his first examination probably in 20 years other than in the study and the physician treated him and the physician was punished by the local medical society i couldn't reconcile that i thought what is this is there's something going on here what was going on as buxton wrote in a letter to the cdc was racism a few months later he was invited to atlanta there was a conference that was going to be attended by the doctors among other people who were running the study in in tuskegee and one of them in particular was outraged at what i had done at what i had written i remember meeting peter buxton and i remember my concern my reaction to what he was proposing he couldn't wait until we got down the hall and into the conference room to begin lambasting me for what i had said and it was see here young man and uh we're getting valuable statistics and we need this to diagnose people who are coming in to find out how long they've had the disease to know how properly to treat them etc we were dealing with a very important study that was going to have the the long-term results of which were actually to improve the quality of care for the black community so that these individuals were actually contributing to the work towards the improvement health of the black community rather than simply serving as merely guinea pigs for the study and of course i was bitterly opposed to cutting off the study for obvious reasons the group of guinea pigs was 100 percent black that in itself in the midst of the fervor of the 60s was just a red flag i i couldn't understand people wanting to do something like that at that time at that time not only was the civil rights movement in full gear but there was a growing concern about the rights of patients and subjects of medical research the public health service itself had issued guidelines to ensure that patients could not be subjected to experimentation without their full knowledge and consent but even those guidelines were ignored by the scientists controlling the tuskegee study finally in 1969 under pressure from peter buxton and others the cdc convened a panel all white and all doctors to review the study after three hours of debate the panel voted to continue the study and withhold treatment from the men they rationalize that since the men had gone without treatment for such a long period of time that giving them penicillin might not help anyway at the meeting there was just one lone voice of dissent my view was that they if they they should treat all the patients and tell them what the what had happened as best they could even if they didn't succeed and even if they felt the patients wouldn't understand i felt they owed it to all concerned to clarify what they had been doing why they had been doing it if we had uh gone to the to the community and told the men that they had had syphilis and had not been treated and that they were now still alive and healthy and did not need any more treatment i don't think we would have been holding out much we would not have been providing them with anything positive we would just have been telling them that 40 50 years ago people did something to them and and now now we're sorry the idea well the damage had been done there's not much that could be done for the men at this point telling them would only upset them is a very powerful example of a paternalistic idea of both medicine and research that can be very very damaging and this idea that well we might as well continue since we've gone this far is one of the aspects of the bureaucratic inertia that really just continued to move the study forward one time after another i was terrified i felt that they were in big trouble and that they were going to create a great stir and that they they would be publicized to the great disadvantage of the public health service in 1972 peter buxton gave his files to a reporter for the associated press the washington star broke the story in july within weeks the government launched an official investigation [Music] in october of 1972 40 years after it began and after at least 28 deaths the tuskegee study was officially halted well after i found out all about it it did make me you know i might have seen some cursed words out by themselves but i would have been shaming themselves i wouldn't have did them like that that's what the newspaper article was saying those men were just watching us to see what that bad blood would do she took you out of that birmingham line did she that pencil and could have saved ben hardman made you a dancing man i gotta find that paper i gotta find it and give it to my lawyer and he handed me the newspaper and he said i'm charlie pollock in this paper and uh he explained to me how he was at the stockyard a day or so before and was approached by a newspaper reporter and he discovered as a result of that conversation that he was a part of what has become known as the tuskegee syphilis study and he wanted to know whether or not i could do something for him about it on behalf of the survivors and families of the deceased gray filed a lawsuit against the public health service and other agencies of the u.s government in an out of court settlement each subject received less than 38 000 a fraction of what gray initially sought for the violation of their rights they had an absolute right to know one that it was a study two that they were not being treated uh for their ailment three they needed to know and had a right to know what was wrong with them and uh they should have been the persons uh who would have given uh their consent or at least exercise a choice as to whether or not they would want to or not want to be involved in the study it's been more than 60 years since the tuskegee study began and 20 since it ended but the echoes of tuskegee reverberate today and many questions still plague the scientific and medical community what are the legacies of tuskegee what has been gained from the sacrifices of the men of the study most observers have criticized the science noting that goals were vague and protocols flawed many subjects received some treatment for their syphilis either sporadic doses of mercury and arsenic in the early days were antibiotics given by doctors outside the study for other infections record keeping was sloppy and men in the control group who became infected were even switched into the study group my regret is in terms of the study i have none uh as a scientist and say one would like to have seen an ideal scientific study but we're dealing with human beings over a long period of time and and this is impossible in the end the study confirmed existing data about the natural course of syphilis and found no evidence that syphilis differs from race to race so-called negative results we hadn't really proven any any points if you if you look at the medical literature as a an index of what we've learned there were 25 30 papers in the medical literature most of them reporting negative results i don't think anything of scientific significance was learned in the tuskegee study but that's not to say that we can't learn an enormous amount about our culture and the practice of science and the practice of medicine from this tuskegee study that might be of very significant use for our society and i think that tuskegee really told us about racism it really told us about the nature in which very powerful prejudices and hatreds can distort the world of medicine and science from the standpoint of many african americans tuskegee is not an isolated incident for a population with an infant mortality rate twice as high as whites and the life expectancy almost 10 percent less there is an entrenched distrust of the white medical establishment among blacks today one legacy of tuskegee is how it fuels and inflames that distrust there are a lot of black people who don't trust white doctors because in this country we look at the skin first and anybody looking at that they will say see i told you you can't trust them don't you go to those white doctors understand why african americans feel that way don't dismiss the feeling because the feeling is there try to understand why it is and and until we do that there will be fears of african americans there would be distrust of the medical profession they'll be distrust of clinical trials and we have to do this and there are more lessons from tuskegee this and other abuses prompted greater protection for experimental subjects and today informed consent is required for all research but jay katz investigates cases where that principle is still violated important abuses still occur and these revolve around the fact that the subjects of research are not fully appraised of the nature of their participation the lessons of auschwitz and tuskegee are these that we should be very very careful about applicating the rights of individual human beings individual subjects of research for any purpose including uh for the noble purpose of advancing science first do no harm that is the first uh the law um one should not carry out our medical care research in a way in which uh harm is done what we should do then is maximize uh what good may be achieved uh given that first law and uh so you know those are the basic rules we've always known them they're the part of the hippocratic oath if within the event that the doctors knew what is wrong with them with us they should have treated us that's the way i feel about it now lord we want to thank thee for these thy people have come so far in this undertaking prayer father that would bless them guide them to and from that place today herman shaw celebrates his 90th birthday he's had a long life and for the most part a healthy one shaw and howard and pollard are among the lucky ones the government gambled with their lives but these men survived others were not so fortunate according to government reports of the 400 men in the study at least two dozen and perhaps as many as a hundred died as a result of untreated syphilis many others suffered the grim consequences of rheumatism blindness and insanity most would have been helped or saved by medical intervention so the tragedy is those men can't speak today and i speak for them but if they could speak from the grave they would say my government should never have done it [Music] so [Music] [Music] so [Music] [Music] [Music] funding for nova is provided by johnson and johnson the signature recognized around the world for commitment to quality healthcare products for the entire family and lockheed america's aerospace company supporting math science and engineering education for national technology leadership major funding for nova is provided by the corporation for public broadcasting and by the financial support of viewers like you [Music] you

[Music] tonight unknown were these men sacrificed to science men were being taken advantage of by the federal government this was not some mad scientist in the basement doing this it was public information lives were lost but the experiments continued it was racially motivated it was racially conceived correspondent george strait travels to alabama to find out the truth behind the deadly deception funding for nova is provided by lockheed america&#39;s aerospace company supporting math science and engineering education for national technology leadership and johnson and johnson the signature recognized around the world for commitment to quality health care products for the entire family major funding for nova is provided by the corporation for public broadcasting and by the financial support of viewers like you herman shaw just short of 90 has lived all his years in alabama [Music] today is a momentous one for sean and for his friend and neighbor charles pollard [Music] they are headed to montgomery the state capitol to be honored guests at a special performance of the alabama shakespeare festival the play they have come to see miss evers boys is a fictionalized account of a notorious medical experiment known as the tuskegee study in this experiment government doctors promised black men in alabama free treatment for syphilis a disease sometimes called bad in blood it&#39;s sending down the best medicine to treat anybody in this county who needs it even if you&#39;re poor if you got bad blood you&#39;ll get a chance to be treated now that&#39;s nothing that&#39;s what i drove and tell in fact the government doctors withheld treatment they were interested in studying syphilis not in curing it herman shaw and carter howard price johnson and charles pollard are survivors of the experiment but hundreds of lives were gambled and dozens of lives were lost in many ways these men&#39;s lives didn&#39;t count these were poor black sharecroppers in macon county alabama and they were in many ways expendable the tuskegee study has been grossly uh misunderstood and misrepresented this way and the fact was that it was concern for the black community trying to set the stage for the best uh public health approach possible in best therapy that led to the study being carried out [Music] what is the truth behind this study i&#39;m george strait and i&#39;ve come here to make in county alabama where it all took place to try to find out the experiment was called the tuskegee study of untreated syphilis in the negro male it was authorized by the u.s public health service paid for with taxpayers dollars and conducted by government doctors now the aim was to learn more about how syphilis this deadly and debilitating disease actually attacks the body the method was to withhold treatment from 400 men all poor all black and all deceived by the promise of care now the medical establishment has never denied the facts of this tragedy which for many has come to symbolize medical misconduct and a disregard for human rights in the name of science but the question remains how could this experiment have happened you&#39;ve got to go back senator to appreciate making county alabama in 1932 to understand what karen met in those times you&#39;ve got to think like we thought then you&#39;re talking about civil rights i&#39;m talking about people just trying to stay alive macon county alabama sits in the heart of the deep south and in many ways this is still the old south over 80 percent of the people who live here are black and many like herman shaw are just two or three generations from slavery [Music] when shaw was a young man in the 1920s most black men and women work the unforgiving fields of alabama as sharecroppers or tenant farmers for white [Music] on landowners come on that&#39;s a man okay good boy [Music] then as now this was a poor county in one of the poorest states in the nation and as in all poor places the people here were oppressed by the ravages of ill health macon county was a poor county there were people there who were sharecroppers and they could not afford health care so that you had high incidences of infant mortality you had high incidences of syphilis you had high incidences of other diseases so it was not a very healthy county but there was mounting attention to the health needs here you see a lot of public health writing at the turn of century talking about germs no no color line so that you had to take care of the health needs of black people or they were going to infect white people and while there were many health problems facing the citizens of macon county in the 1920s and 30s here and throughout the nation it was syphilis that aroused people&#39;s fears it would have been enormously frightening to have the diagnosis of syphilis for really two reasons one because of the many many symptoms and terrifying consequences that syphilis truly does have and secondly because there had been so much attention to syphilis and the creation of what people called cyphalophobia people thought it was everywhere and people were horrified to learn that they might be infected and it was so highly stigmatized because of its association with illicit sexual behavior now that the curtain of secrecy has at last been removed everyone should know the truth about syphilis and gonorrhea syphilis is spread by intimate contacts usually sexual the cause of syphilis can be seen by the 1920s scientists had established that this tiny organism a spirochete can live in the body for years or decades they knew that syphilis could cause a life sentence of illness blindness heart disease crippling arthritis and often premature death but there were treatments toxic arsenic mercury and bismuth compounds injected over more than a year would attack the spirochetes in most cases the treatments would render the disease non-infectious and prevent its worst damage with widespread knowledge and with these weapons america can conquer in one generation [Music] this was a disease that really was the epitome of what modern medicine was about you could find the cause you could find out whether somebody was infected and you could treat them effectively so this created enormous attention to syphilis in the 1920s and the 1930s because public health officials said here&#39;s a disease that we can really effectively address the u.s public health service was run by idealistic physician scientists they were eager to use the combined weapons of germ theory sanitation basic research and public education to fight and conquer disease syphilis with more than 300 000 new cases every year was an early target as part of this campaign the public health service launched six pilot projects in the south in predominantly poor black communities these efforts were partially supported by state and philanthropic funds one project was in macon county alabama in 1930 government doctors arrived with high hopes and an ambitious plan to diagnose and treat as many as 10 000 people effective therapy would require an arduous and sometimes painful course of treatment with toxic compounds administered over a year and a half initial blood testing revealed an epidemic rate of syphilis in macon county 35 of the black men and women here were infected but the public health service had underestimated the costs of providing treatment to so many and they hadn&#39;t counted on the great depression lasting so long by the end of 1931 there was not enough money to continue the program of the thousands infected the public health service had treated only fourteen hundred and of these many did not receive the full course of therapy the government doctors pulled out leaving the men and women here to the mercy of the disease but this was not to be the end of the makin county syphilis project back in washington public health service officials were anxious to salvage some scientific benefit from the abandoned program the head of the vd division talifer clark had a plan if there was not enough money for a costly treatment campaign perhaps there were funds for less expensive research he proposed macon county is the ideal site for a six-month study of untreated syphilis clark wrote macon county is a natural laboratory already made situation the rather low intelligence of the negro population depressed economic conditions and the very common promiscuous sex relations not only contribute to the spread of syphilis but also to the prevailing indifference with regard to treatment clark proposed to investigate whether syphilis was the same disease in blacks and in whites the question emerged from theories that there were fundamental genetic and physical differences between the races when you look at many of the medical writings at the turn of the century especially those of white physicians and nurses and public health experts the focus is on genetics that somehow it was in that black people were inherently specific that black people were inherently tuberculous that black people had smaller brains and because they had smaller brains they couldn&#39;t control their lust they were immoral there was also a widely held belief that syphilis in blacks was not a deadly disease clark hoped that debunking this would free up new funds for treatment programs he knew he needed local help to implement his plan and he turned to macon county&#39;s brightest light the tuskegee institute founded by booker t washington to educate freed slaves and their descendants the school had garnered the trust of the local community and the respect of the nation tuskegee was committed to the health needs of blacks and had a well-equipped hospital laboratories and a highly trained medical staff all the facilities needed for a research study and here was a major research project an unparalleled scientific opportunity at least that&#39;s the way the designers of the experiment described it for its part the school had long depended on the moral support and financial backing of the federal government so when the public health service came asking for help it was difficult to say no in the autumn of 1932 the university agreed to collaborate and the syphilis treatment program was transformed into a scientific study designed to collect data and the men of macon county were changed unwittingly from patients to experimental subjects no voice was raised in protest no questions asked about the welfare or the rights of the men for the greater part of the 20th century we assume that what physicians and scientists were doing was morally responsible and conscientious and we didn&#39;t really ask about it [Music] possible death or liberty this is the risk 10 convicts are volunteering to take in the fight against sleeping sickness we&#39;re doing this for the sake of humanity in the 30s there were no regulations to ensure that subjects were fully informed about experiments or protected from unnecessary risks this study was designed to investigate sleeping sickness the test begins in glass tubes with gauze at the ends are mosquitoes which were fed on victims of the saint louis epidemic will their bite affect these men that is science&#39;s question can you feel them yes ma&#39;am research subjects will most likely come from those who are in some ways not only medically disadvantaged but socially disadvantaged in one way or another and therefore the burden of human experimentation historically has often rested on those who are in some manner least able to protect themselves from from this kind of investigation in the macon county experiment the subjects were found through the two institutions they trusted most church and school herman shaw heard about a chance to become a special government patient the way i heard about it was through a rumor that uh the people that came out of macon county people said that you could get free medicine for yourself and things of that kind and they would have a meeting at salmon chapel at a certain date and those of us were eligible was of a certain age but then when there had to be a certain age to be able to participate in this meeting therefore i went well that&#39;s that afternoon when we went over there but then they said that we&#39;d get free medicine wouldn&#39;t cost us anything and a doctor would get free doctrine the doctors said they had come to cure bad blood when you first started up you see i didn&#39;t know nothing just a country boy it&#39;s to say when they got down here in alabama they found what they wanted he just went to doctoring on us and and said he&#39;s gonna treat us they just said bad blood bad blood was a euphemism it could have meant syphilis it could have been tired blood so that bad blood meant lots of different things it was not what one would call a very concise term but the point is the men were told that they had something wrong with them and that they were being treated for their bad blood with promises of free treatment for bad blood the doctors recruited 400 men never before treated and now in the later stages of syphilis much was already known about the natural history of this disease syphilis is most contagious in the first weeks and months and is spread sexually and congenitally from mother to fetus in its early stages rashes headaches fevers and pain are common then syphilis enters a symptomless latency period which lasts for months to decades and for a lucky minority never ends but for the majority there will be a relapse the violent storm of late syphilis now the disease attacks the brain internal organs and joints of its most unfortunate victims [Music] as the tuskegee study began the government doctors catalogued the effects of latent and late syphilis they conducted blood tests detailed physical exams and x-rays and there was one more test they wanted a purely diagnostic spinal tap to determine the prevalence of neurological syphilis i&#39;m going to locate that spot between the vertebrae in your lower back and make a small needle puncture there to withdraw some fluid not much to it really good bend your head over further further i said good good now you&#39;re going to have to sit very still the sevens will help you especially once that needle is inside your spinal canal don&#39;t move or that needle might injure the nerves in your legs to my legs that&#39;s right that&#39;s why we don&#39;t want you to move don&#39;t worry i&#39;m not moving all right here we go you going too far i have to try to climb this final canal all right here we go all right we&#39;re pretty bad that&#39;s final tap because i did alone pretty good with it but uh and uh i stayed in the beer a week or two this letter sent to each man before his spinal tap claimed it was a very special free treatment some time ago you were given a thorough examination and since that time we hope you have gotten a great deal of treatment for bad blood you will now be given your last chance to get a second examination this examination is a very special one and after it is finished you will be given a special special treatment if it is if it is believed you are in a condition to stand at remember this is your last chance for a special free treatment the men were told that the spinal taps were a treatment that shows you some of the deception and deceit involved in the study and these are physicians saying this so that it has a certain power and authority a physician saying this men from this community were told that the government doctors had come to help them they were never informed of the real purpose of the research project they were never told the true nature of their illness nor the dangers they faced according to the original proposal the tuskegee study was to be finished at the end of six months instead it was just beginning government doctors became fascinated by the early data they saw indications that blacks suffered the same complications from syphilis as whites that was exciting because it contradicted the prevailing wisdom that somehow syphilis was different and less deadly among blacks the investigators convinced themselves that their research could answer other more general questions as well in their mind they thought they could break new scientific ground in the study of syphilis their excitement propelled them forward as the tuskegee study was poised to make its most fateful turn raymond vondelaire a young field officer now played a critical role particularly enthralled by the science and blatantly unconcerned for the welfare of the men he pushed to extend this study into a long-term open-ended research project soon vandalia was promoted to the head of the vd division and had the power himself to implement his plan now preparing for the long-term study the public health service hired a tuskegee nurse eunice rivers the inspiration for miss evers in the play rivers was to become the main liaison between macon county and washington driving the back roads of rural alabama to monitor the subjects and tend to their minor complaints she traveled to country fairs and churches and schools to maintain contact with the men and their families she also helped to recruit a group of controls 200 men free of the disease but river&#39;s main responsibility was to gather the study participants for the now annual roundups when the government doctors came to town on each subject they performed physicals and blood tests and to maintain the appearance of treatment the doctors gave the men placebos vitamins aspirins and tonics all useless against syphilis we got three different types of medicine we got a round peel and sometimes they give us a capsule and then they would give a little vial of liquid medicine everybody got the same thing these were men who weren&#39;t going to question the system who weren&#39;t going to question the government doctors who weren&#39;t going to be out there picketing and writing and protesting about it these were men in macon county alabama who&#39;s going to speak for them in the 1930s throughout the south legally enforced segregation maintained a system of racial hierarchy black people were expected to live in deference to white authority when some of the men of the study were ordered by their employers to go for blood testing they had little choice but to comply the public health service continued to rely upon that authority in miss evers boys the nurse is based on eunice rivers and the character of dr douglas represents vandalia and the medical establishment to treat these men by mistake this is the decision washington has made this study must go to end point and how far is that autopsy autopsy the facts in this study must be validated by autopsy we&#39;re so close and the public health service wasn&#39;t above a bit of bribery those men need our help don&#39;t they of course they do would fifty dollars be account for those men fifty dollars is a lot of money in making county dr douglas um would uh fifty dollars life insurance convince those men to stay with this study life insurance for berry a decent bearer would mean a lot to those men they&#39;re buried in feed sex by the city dump as long as this study continues any study patient who dies for whatever reason receives fifty dollars life insurance washington would do that nurse ever as if it would help in the earlier years they gave even less my father-in-law was in the study and he died early and they gave him 35 dollars in a barrel and then that was almost very important in those days in fact it would put you give it give your casket pretty decent barrel in exchange bodies were taken to a local hospital for postmortems tuskegee nurse mary harper assisted we were to start off you know with the the autopsy and dr pierce was saying my god it is interesting for when we saw a great deal of the the spread and the devastating effect that the syphilis had had on on the body he was saying uh you know what mary pulled the clinical record for this particular patient and we want to see to what extent does his clinical manifestation match uh the amount of pathology that we had found in the body that was the thing that was very very interesting as the records indicate the autopsies sometimes revealed even more damage inside the bodies than had been expected from previous physical exams once you start looking down in those bar in that body and looking at the various organs and the effects that it had then you know it is a very very devastating illness the very first autopsy was performed at the end of 1933. over the years many deaths were to follow this one each dutifully noted in government reports and scientific papers the tuskegee study was almost never a secret from its very inception and one of the most interesting and difficult aspects to account for it is the fact that periodically starting in 1936 and then on a fairly regular basis the results of the study&#39;s findings were reported in major medical journals in the early years the findings were sometimes also reported to congress but no one inside the medical establishment or government questioned the merits of the study this was not some mad scientist in the basement doing this that it was public information and i think people did not raise issues about it because they didn&#39;t see anything wrong with it the medical profession did not see anything wrong with it [Music] the first article was published in 1936 in the journal of the american medical association the researchers reported that of their 400 subjects 75 suffered some complications of late syphilis half showed cardiovascular damage and a third had neurological symptoms the scientists continued to find the data intriguing and they watched and waited to see what would happen next to the men of the study [Applause] [Music] by 1937 conditions in macon county were looking up during a new deal sweep through the south fdr brought his message of hope to tuskegee we&#39;re realizing more and more that it&#39;s a great privilege to be alive somebody said it&#39;s grand no matter how old you get to want to keep on living because there&#39;s still so much to be done [Applause] as part of the program of national recovery the government reasserted its public health initiatives [Music] the public health service launched a revived nationwide campaign to combat the syphilis epidemic it was run by the principal architect of the tuskegee study raymond vondelier the physician who accepts for treatment a patient with syphilis assumes a very definite public obligation when you accept a patient you should likewise accept the responsibility of assuring yourself that he completes the treatment schedule by 1938 there was a national venereal disease control act and throughout the nation including alabama the public health service pushed for syphilis treatment programs but not for the men of tuskegee they were systematically excluded and if they sought out help they were tracked down and stopped this happened to herman shaw when he went to birmingham alabama for treatment when i got there i saw a nurse pacing through the camp somebody she was disturbed and thinking she&#39;d been looking for someone that wasn&#39;t supposed to be there there are two patients in this treatment clinic who do not belong here is there a man here named willie johnson is there a man here named caleb humphreys yes i&#39;m over here you wearing a new hat what are you doing here willy johnson see what are you doing up here i said well they told me i had to come up here they sure you got to go to birmingham so did you come here come here that doctor did not know you were a government patient if that doctor had known that he wouldn&#39;t have sent you here and you get back on that bus to tuskegee and they gave me breakfast and put me on the bus and send me back the thought i said you didn&#39;t supposed to be so you and megan county clinic one of the remarkable aspects of the study was the lengths to which the public health service went to ensure that the men never received treatment and when some of the men by their own design were able to obtain treatment this was perceived by the researchers as abrogating the study the world was changing spurred on by the second world war but single-mindedly the researchers ignored or circumvented each change that threatened their study after 1941 millions of americans were swept into the armed forces all of them were tested for disease and those infected with syphilis were ordered to treatment but in tuskegee the scientists running the study appealed to the draft board to exclude their subjects from military service so their syphilis would remain untreated study subject charles pollard however was inducted into another type of service when the u.s government asked him to appear in this film to promote black support for the war effort he agreed pollard and his wife played the proud parents of an army pilot a member of the famed tuskegee airmen [Music] charles pollard was eligible for the draft during the war but he was never called to duty to the u.s government he and the other men of the study had their own special status [Music] as the war raised the stakes the public health service escalated its campaign to rouse the national will against syphilis [Music] this wartime propaganda took on a decidedly moralistic tone search out the places that infect the city protect its people the places with the easy pickups this is where syphilis must be fought search out the people to the people who carry the disease and soon these campaigns were fortified by a revolutionary medical breakthrough the war period saw the rise of a wonder drug penicillin recognition that penicillin effectively treated syphilis had remarkable implications immediately during the war for the treatment of syphilis among american troops but beyond that was kind of a marker that in fact perhaps there would be magic bullets by now john heller had replaced vondelaire as the director of the tuskegee study more than 200 000 new infections of syphilis are acquired in this country each year all are actually or potentially highly infectious on the basis of present evidence penicillin appears to have great value in the treatment of syphilis in virtually all stages and manifestations whatever the future may hold for penicillin therapy we physicians already have in our hands weapons which with proper medical usage should enable us to reduce materially the amount of venereal disease in the united states while promoting penicillin for the nation heller continued the policy of denying treatment to the men in macon county in 1947 he published the latest findings from the study in the journal of venereal disease information the life expectancy of a negro man between 25 and 50 who is infected with syphilis and receives no treatment is reduced by about 20 percent the fact that nearly twice as large a proportion of the syphilitic individuals as of the control group has died is a very striking one even with undisputed evidence that men were dying no penicillin was offered one of the few surviving public health service doctors who worked on the study still defends that decision john cutler it was important they were supposedly untreated and it would be undesirable to go ahead and use large amounts of penicillin to treat another disease because you&#39;d interfere with the study the fact that the men are denied penicillin simply reaffirms how determined the public health service is to keep this experiment going i don&#39;t see it as a new issue having decided to withhold the treatment of choice in the 1930s treatment that doctors in the 1930s said was good treatment i don&#39;t think that there&#39;d be any ethical dilemma for withholding penicillin when that presents itself it already crossed that bridge [Music] if the ethics of the study had ever been unclear the events of 1947 should have brought them into sharp focus second trials the american military tribunal hearing evidence against 23 of the leading nazi doctors the nuremberg tribunals uncovered amid the perverse horrors of the nazi regime gross examples of human experimentation in the name of medical science the trial of these nazi doctors led the international community to formulate the nuremberg code for the protection of human subjects its first and central principle was informed consent subjects must voluntarily agree to be part of any experiment and must be fully aware of all risks the scientists of the tuskegee study including director john heller dismissed the relevance of nuremberg i asked him specifically about nuremberg and whether that gave him any pause and he said absolutely not i asked him if whether he ever drew any associations between what they were doing and what the nazis had done and he said certainly not and then he uh he looked at me with a kind of wounded innocence and said they were nazis the nazi concentration at camp experiments because of their fiendish nature were seen as an aberration as something [Music] that could not happen anywhere else in the civilized world and therefore it was relegated into a special category but there were important lessons to be learned from nuremberg and those lessons were not learned and so the government doctors and nurse rivers continued their roadside roundups to observe but not treat the ever fewer survivors despite the many changes around them the national campaign to treat syphilis the advent of penicillin the horrors exposed at nuremberg the researchers pushed on undeterred and soon there was yet another development to ignore it is ironic that in this county where so much emphasis was being placed upon civil rights and the right to vote that there could be a a situation occurring that most people did not realize uh where african american rule county underprivileged a very little educated men were being taken advantage of by the federal government in the mid 50s fred gray was an attorney for martin luther king at the center of the civil rights movement that exploded just 40 miles from tuskegee in montgomery alabama i don&#39;t even believe that the persons who started the study would have even considered using white persons instead of black it was racially motivated it was racially conceived they found here a pocket of blacks who the nation really would care little or nothing about during the turbulent years of the civil rights movement in alabama the study went on the scientists continued to ignore this new force that shook the world around them instead they watched and they waited to see what would happen next to the men of the study a decade later in the mid 60s the civil rights movement was in its prime and the tuskegee study was almost 40 years old the study was now managed by the centers for disease control an agency of the public health service and here the first rumblings of concern began a young epidemiologist learned about the study and tried to have it exposed we collected the studies put them in a package and sent them to the washington post in the um new york times and so on and uh waited for the major break to come well of course it never came we were fairly naive about um how the media worked um i think now we would know that we should have written the press release and we should have you know had the contact and we should have followed up and all that sort of stuff but at this point we thought all we had to do was tell america that something was wrong here and um everything would be all right and everybody would understand and everything was not all right not everybody understood and nothing was done across the country in san francisco the story took another critical turn peter buxton was a public health service vd worker one day in the coffee room at work an older associate was telling a story of a man with insanity a black man who was rushed by his family to a physician his first examination probably in 20 years other than in the study and the physician treated him and the physician was punished by the local medical society i couldn&#39;t reconcile that i thought what is this is there&#39;s something going on here what was going on as buxton wrote in a letter to the cdc was racism a few months later he was invited to atlanta there was a conference that was going to be attended by the doctors among other people who were running the study in in tuskegee and one of them in particular was outraged at what i had done at what i had written i remember meeting peter buxton and i remember my concern my reaction to what he was proposing he couldn&#39;t wait until we got down the hall and into the conference room to begin lambasting me for what i had said and it was see here young man and uh we&#39;re getting valuable statistics and we need this to diagnose people who are coming in to find out how long they&#39;ve had the disease to know how properly to treat them etc we were dealing with a very important study that was going to have the the long-term results of which were actually to improve the quality of care for the black community so that these individuals were actually contributing to the work towards the improvement health of the black community rather than simply serving as merely guinea pigs for the study and of course i was bitterly opposed to cutting off the study for obvious reasons the group of guinea pigs was 100 percent black that in itself in the midst of the fervor of the 60s was just a red flag i i couldn&#39;t understand people wanting to do something like that at that time at that time not only was the civil rights movement in full gear but there was a growing concern about the rights of patients and subjects of medical research the public health service itself had issued guidelines to ensure that patients could not be subjected to experimentation without their full knowledge and consent but even those guidelines were ignored by the scientists controlling the tuskegee study finally in 1969 under pressure from peter buxton and others the cdc convened a panel all white and all doctors to review the study after three hours of debate the panel voted to continue the study and withhold treatment from the men they rationalize that since the men had gone without treatment for such a long period of time that giving them penicillin might not help anyway at the meeting there was just one lone voice of dissent my view was that they if they they should treat all the patients and tell them what the what had happened as best they could even if they didn&#39;t succeed and even if they felt the patients wouldn&#39;t understand i felt they owed it to all concerned to clarify what they had been doing why they had been doing it if we had uh gone to the to the community and told the men that they had had syphilis and had not been treated and that they were now still alive and healthy and did not need any more treatment i don&#39;t think we would have been holding out much we would not have been providing them with anything positive we would just have been telling them that 40 50 years ago people did something to them and and now now we&#39;re sorry the idea well the damage had been done there&#39;s not much that could be done for the men at this point telling them would only upset them is a very powerful example of a paternalistic idea of both medicine and research that can be very very damaging and this idea that well we might as well continue since we&#39;ve gone this far is one of the aspects of the bureaucratic inertia that really just continued to move the study forward one time after another i was terrified i felt that they were in big trouble and that they were going to create a great stir and that they they would be publicized to the great disadvantage of the public health service in 1972 peter buxton gave his files to a reporter for the associated press the washington star broke the story in july within weeks the government launched an official investigation [Music] in october of 1972 40 years after it began and after at least 28 deaths the tuskegee study was officially halted well after i found out all about it it did make me you know i might have seen some cursed words out by themselves but i would have been shaming themselves i wouldn&#39;t have did them like that that&#39;s what the newspaper article was saying those men were just watching us to see what that bad blood would do she took you out of that birmingham line did she that pencil and could have saved ben hardman made you a dancing man i gotta find that paper i gotta find it and give it to my lawyer and he handed me the newspaper and he said i&#39;m charlie pollock in this paper and uh he explained to me how he was at the stockyard a day or so before and was approached by a newspaper reporter and he discovered as a result of that conversation that he was a part of what has become known as the tuskegee syphilis study and he wanted to know whether or not i could do something for him about it on behalf of the survivors and families of the deceased gray filed a lawsuit against the public health service and other agencies of the u.s government in an out of court settlement each subject received less than 38 000 a fraction of what gray initially sought for the violation of their rights they had an absolute right to know one that it was a study two that they were not being treated uh for their ailment three they needed to know and had a right to know what was wrong with them and uh they should have been the persons uh who would have given uh their consent or at least exercise a choice as to whether or not they would want to or not want to be involved in the study it&#39;s been more than 60 years since the tuskegee study began and 20 since it ended but the echoes of tuskegee reverberate today and many questions still plague the scientific and medical community what are the legacies of tuskegee what has been gained from the sacrifices of the men of the study most observers have criticized the science noting that goals were vague and protocols flawed many subjects received some treatment for their syphilis either sporadic doses of mercury and arsenic in the early days were antibiotics given by doctors outside the study for other infections record keeping was sloppy and men in the control group who became infected were even switched into the study group my regret is in terms of the study i have none uh as a scientist and say one would like to have seen an ideal scientific study but we&#39;re dealing with human beings over a long period of time and and this is impossible in the end the study confirmed existing data about the natural course of syphilis and found no evidence that syphilis differs from race to race so-called negative results we hadn&#39;t really proven any any points if you if you look at the medical literature as a an index of what we&#39;ve learned there were 25 30 papers in the medical literature most of them reporting negative results i don&#39;t think anything of scientific significance was learned in the tuskegee study but that&#39;s not to say that we can&#39;t learn an enormous amount about our culture and the practice of science and the practice of medicine from this tuskegee study that might be of very significant use for our society and i think that tuskegee really told us about racism it really told us about the nature in which very powerful prejudices and hatreds can distort the world of medicine and science from the standpoint of many african americans tuskegee is not an isolated incident for a population with an infant mortality rate twice as high as whites and the life expectancy almost 10 percent less there is an entrenched distrust of the white medical establishment among blacks today one legacy of tuskegee is how it fuels and inflames that distrust there are a lot of black people who don&#39;t trust white doctors because in this country we look at the skin first and anybody looking at that they will say see i told you you can&#39;t trust them don&#39;t you go to those white doctors understand why african americans feel that way don&#39;t dismiss the feeling because the feeling is there try to understand why it is and and until we do that there will be fears of african americans there would be distrust of the medical profession they&#39;ll be distrust of clinical trials and we have to do this and there are more lessons from tuskegee this and other abuses prompted greater protection for experimental subjects and today informed consent is required for all research but jay katz investigates cases where that principle is still violated important abuses still occur and these revolve around the fact that the subjects of research are not fully appraised of the nature of their participation the lessons of auschwitz and tuskegee are these that we should be very very careful about applicating the rights of individual human beings individual subjects of research for any purpose including uh for the noble purpose of advancing science first do no harm that is the first uh the law um one should not carry out our medical care research in a way in which uh harm is done what we should do then is maximize uh what good may be achieved uh given that first law and uh so you know those are the basic rules we&#39;ve always known them they&#39;re the part of the hippocratic oath if within the event that the doctors knew what is wrong with them with us they should have treated us that&#39;s the way i feel about it now lord we want to thank thee for these thy people have come so far in this undertaking prayer father that would bless them guide them to and from that place today herman shaw celebrates his 90th birthday he&#39;s had a long life and for the most part a healthy one shaw and howard and pollard are among the lucky ones the government gambled with their lives but these men survived others were not so fortunate according to government reports of the 400 men in the study at least two dozen and perhaps as many as a hundred died as a result of untreated syphilis many others suffered the grim consequences of rheumatism blindness and insanity most would have been helped or saved by medical intervention so the tragedy is those men can&#39;t speak today and i speak for them but if they could speak from the grave they would say my government should never have done it [Music] so [Music] [Music] so [Music] [Music] [Music] funding for nova is provided by johnson and johnson the signature recognized around the world for commitment to quality healthcare products for the entire family and lockheed america&#39;s aerospace company supporting math science and engineering education for national technology leadership major funding for nova is provided by the corporation for public broadcasting and by the financial support of viewers like you [Music] you

Transcript for:Ethical Violations in the Tuskegee Study

Transcript for:
Ethical Violations in the Tuskegee Study