http://sciencecases.lib.buffalo.edu/cs/collection/detail.asp?case_id=371&id=371
Please read the following case study by clicking on the link above. You will need to “Download Case” as a pdf for viewing.  It is related to our class discussion on research methods, and includes an important dimension related to race and health research ethics.
YOUR TASK: At its end you will see 5 questions. Please respond below to ONE question of your choice using the comments feature below.
#5 Definitely not. I mean, extended studies of people’s lives are not uncommon, however, the manner in which it was conducted was blatantly unethical. The people experimented upon were kept in the dark about the true objectives of the experiment, which was flawed to begin with due to the treatment introduction. The panel discussion about the experiment, which lacked physicians of African descent, or those trained in medical ethics is particularly disturbing.
The fact that it took a “whistleblower” for the experiment to stop as recently as the 1970’s makes me wish that this story was fake.
#3 This study kept African Americans in the dark about the experiment which may have been fine in a placebo experiment, but even when patients were being treated nationwide the men in the Tuskegee study were viewed as experimental
subjects and were denied antibiotic treatment. They even had an African American nurse who believed only that the doctor was always right in order to coerce the men into a false state of security without treatment. Among the people of the PHS panel none were of African American descent and they in fact were racially biased in that they claimed the Tuskegee men were too far gone to be effectively treated by penicillin and that such therapy would make matters worse. They were doing human experimentation which was moralistically wrong especially with the opposing party knowing nothing of what was going on.
5. Could this project (or one similar to it involving AIDS or radiation effects) be conducted today?
This project would never be conducted today because there are rules and regulation placed in place to protect the right of the patient. In today society anything treatments that doctor perform on the patient must have the informed patient consent to do anything and the patient has the right to refuse treatments.
No I do not believe this kind of study could be performed today because of patient privacy, ethics and the patients rights to know what and why they are being treated by any physician and also when it comes to patients with AIDS the rules for privacy and treatment are way more different for a patient without it an experiment to this extent would lead to plenty of lawsuits and licenses being revoked if it were tried today.
Question #5
# 4 Some of the factors underlying the cessation of the project was the moral factor of the study. According to the article neither the syphilitics nor the controls were informed of the studyâs true objective. These men only knew that they were receiving treatment for âbad bloodâ and money for burial. Also support form other associations like “The American Heart Association” who asked for clarification of the scientific validity of the experiment, then expressing great doubt and criticism concerning the tests and the way the procedures were being conducted. The fact that it took physician Peter Buxtin’s interview with the Associated Press to end the experiment by basically coming clean about the true intentions of this experiment says a lot about the moral factor of this experiment.
#5.
While the project cannot be carried out in the same way it was carried out then, it would most definitely be possible to have a similar study done. Would it be against the law inside the country? Sure, but that hasn’t stopped us before. All it would take is an isolated area with very little development (no technology) and the manpower to keep others out. The government could claim the area is on lockdown in the interest of “national security” as they have done with other projects and black ops. There would certainly be repercussions from this as well. I suppose a better way to say it without talking in circles is that is possible for it to happen again, just improbable.
Question # 3: What kind of criticisms can you offer of this study
Legal and ethical issues create standards by which a research should be conducted and governments worldwide, not only fund researches but also establish rules for adhering to ethical principles. The three primary ethical principles on which standards of ethical research conduct are based such as beneficence, respect for human dignity and justice were completely violated in the Tuskegee Study.
Beneficence, the duty to minimize harm and maximize benefits was not observed in the study. The study was non-therapeutic and was mostly focused on observing the progression of untreated syphilis in African American males. Respect for human dignity which includes the right to full disclosure was completely violated in the sense that neither the syphilitic, nor the control group, were informed of the studyâs true objective. The participants were told that they were going to receive treatment for bad blood or syphilis and money for burial. In his study, even the informed consent has no validity because the right to self determination, meaning the right to decide voluntary and the right to full disclosure which are the two elements on which an informed consent is based are completely violated.
Research studies of this nature are unethical and should not be approved or authorized.
# 3 what kind of criticism can you offer this study?
This case of these men, who were for the most part illiterate sharecroppers from one of the poorest counties in Alabama,who had not a bit of clue about this disease were never told what disease they were suffering from or of its seriousness. Informed that they were being treated for “bad blood”,their doctors had no intention of curing them of syphilis at all. They were injected by the virus that cause the disease,and most importantly without their informed consent which is ethically wrong. A malificient act from the Doctors.if it was now this experiment such non-disclosure and withholding thing that causes many of negros their lost unjustifiably,would gave had a different outcome.
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3. What kind of criticisms can you off er of this study?
I believe that this study was completely unethical and somewhat racist as well. The researchers exploited the participants who were low income African Americans. They were used for human experimentation on Syphilis. The researchers claimed that it was a valid study because âSyphilis in the Negro is in many respects almost a different disease from syphilis in the whiteâ (Fourtner et al, 2000, p.3). However, I feel like this was just an excuse to study the disease. They participants were not even given the full detail about the study. Researchers lied to them about their purpose. Therefore, informed consent could not have possibly been given.
Also, the participants were denied treatment and were even convinced to not seek any. This is immoral. A healthcare worker should not, in any way, harm the patient and should find the best way to treat a patient’s illness.
On top of how unethical and immoral the study was, it is also invalid and unreliable since some of the patients have already received some treatment. The information is not consistent. Overall it was a bad study rather than “bad blood.”
What kind of criticisms can you offer of this study?
I really disliked the fact that ethics were not even discussed among all of the people that conducted and moderated the âstudyâ. This was just plain disrespect and horrible from the jump. All of the men who participated in this study were illiterate and poor. How were they supposed to know what syphilis really was if the doctors only told them it was âbad bloodâ. Even though that term bad blood was used to group syphilis and other diseases, the doctors still should have disclosed this information to them. What really bothered me as well was when the cure/treatment arrived, none of these men were allowed to receive it. AND, they were never told the name of the actual study âTuskegee Study of UNTREATED Syphilis in the Negro Maleâ. So many things were wrong with this and Iâm glad it got brought to the light by reporters and investigators. There may have been a bigger conspiracy thing going on here, I got that feeling while reading this.
5. A study like this could be conducted today if proper planning and precautions where to be taken. When dealing with radiation effects there must be precautions taken to avoid putting the patient or subject in danger. Similar precautions must be taken to protect people with aids who would be tested if the situation was to arise. In the Tuskegee experiment the subjects where sometimes given just enough treatment to keep the disease from spreading but not enough to prevent the disease from having an effect on the subjects. This was done so that the effects could be observed. The danger presented by doing something like this is that the patient could have permanent damage done to them by the disease if proper precautions are not adhered to.
5. Could this project (or one similar to it involving AIDS or radiation effects) be conducted today?
I highly doubt that an experiment that treats human being as test subjects rather than people would ever be conducted today. This was a study that was more concern with the outcome than the well being of the people involved. I would like to believe that an experience so inhumane would never occur in the world today .The subjects not even being aware of the truth and real reason they were being studied shows how unethical the whole study was. I can’t fully understand how anyone could deprive a patient the cure of an illness in order to see what the effects of the illness be on a person.
#5- Could this project (or one similar to it involving AIDS or radiation eff
ects) be conducted today?
– I personally don’t believe this study could be conducted today. In today’s society, you cannot do any type of experimentation without a fully detailed and accurate summary of what the experiment will entail as well as full consent from the patients. You also cannot deny the patient treatment because that is completely unethical and it is a lawsuit waiting to happen.
#3 What kind of criticisms can you offer of this study?
I believe this study was wrong, Like it said in the article they targeted at African American people who never was treated by the doctors, so they went there to started their experiment on Syphilis because I think the PHS knew they wouldn’t mind being checked especially it was a free medical check up.
* Correct me if its wrong I had to read this article so many times to understand *
I think that the fact that ethics, were not followed could make us question the results of this experiment or the true reasons behind it. Apart from being immoral, the subjects were not offered a solution to their problem even after the medicine became available.
Alot of the people who participated in the experiment also died during the course of the study. In fact, maybe if the participants had been given the medicine they could have lived longer and provided better results such as the side effects of penicillin. the biggest issue, though; was when they started to question the moral ethics of the experiment,a nd the fact not one of the scientists was from African American descent. in a study of such a large scale, there is no voice and record as to what was discussed behind closed doors. I think that if anything, the subjects should have been given the choice and informed about the possible treatments available at that time. In other words, there is alot of questions unanswered which we may never know.
5. Could this project (or one similar to it involving AIDS or radiation effects) be conducted today?
No it would not be able to be conducted today. It is unethical, and for the ones left in the dark, there would be lots of retaliation if they somehow found out what they are really used for. If they were to be honest, there would be a higher chance of getting better data results. But even before this “experiment” can be conducted, you would not get a lot of participants without having to describe in detail as to what the tests are being done to them, medications, etc. etc. We have a lot of protection against us now, and it’s basically unethical now.
3. What kind of criticisms can you offer of this study?
Not only was the Tuskegee study unethical, overall, it barely has any purpose. The only purpose I picked up from the reading is that they were able to identify symptoms. If that is the only purpose of the experiment, then I believe there was no point to this experiment because there were other ways to collect data on the various symptoms. The experiment was even carried out poorly. Based on a finding that the disease affects African American differently which the researchers were able to justify, the researchers were able to add a previous study (Macon study) done on African American into the Tuskegee study. These people received partial treatment; however, the Public Health Service viewed the partial treatment as insufficient and that their study will not be affected in the long run. This action already contaminated the experiment. In addition, the researchers were extremely vague about their true objective of the study. If they informed the participants that they were just going to watch them, that it might last for over 30 years and possibly until they died, and that they will not find a solution to treating or curing the âbad bloodâ, I highly doubt anyone would have participated especially if it concerns their health. Who would participate in an experiment where researchers observe you with an illness until the point you died and the agreement was that youâre not allowed treatment? The researcher even continued their study after a cure is found which made no sense because at least 30 years were already conducted which should be sufficient data on symptoms so why prolong the study. The data was also collected poorly (they were unable to locate about 20% of their participants in both their experimental group and control group). Overall, I think the experiment was unethical, it was carried out poorly, and it probably served no purpose.
5.Could this project (or one similar to it involving AIDS or radiation effects) be conducted today?
Mostly likely it would not be conducted today because we as patient we have the right to say no, if we do not agree with what the doctor say. Now day whatever the doctor perform on us they would need to tell us information’s and also we need to sign a consent in order for the doctor to proceed. Also sometime we would need a family member or someone close to use to witness in case of anything happen.
#3. The experiment could have gone differently if their motives had not changed. The initial idea for the experiment was helpful for some African-Americans who never received any type of medical attention but once you refuse to treat someone for an illness it becomes wrong. Once they discovered who had syphilis, they should have started to treat them right away. When penicillin became available to treat syphilis, those involved in the study should have been the first considered for the treatment. It was also wrong of them to trick Nurse Rivers into thinking that what she was doing was right. The murder of these subjects was unethical and killed many innocent men and their spouses.
3. What kind of criticisms can you offer of this study?
This study went completely wrong against gender, race, and ethnicity. People were being used like animal observation. People treated African-Americans as medical slaves when African-Americans trust the U.S. government. During the experiment people faced the death eventually. This is a crime and homicide. I just wonder if the results were worth killing people.
This experiment reminds me of the human experimentation ‘Maruta’ (Unit 731) in Japan in 1940s.
# 3 what kind of criticism can you offer this study?
The people that were experimented were kept isolated about the true meaning of this experiment, which was defective, with due to the treatment initiation. It was very upsetting when patients were being âtreatedâ the men in the Tuskegee were viewed as experimental subjects and were denied any medical treatment. This was very racist towards the African American race. The fact that they were doing a human experimentation, which was very wrong especially with the patients not knowing anything of what was going on, in their health and future. I was very upset how they were convinced not to seek for treatments, a normal health care worker or doctor would suggest otherwise.
5) This project most definitely could not be conducted today. The conductors of this experiment would not be able to leave out details to their patients now, as it would not be legal. A patient has the right to know what is being done to them and their body. When the experiment was conducted, African Americans were left in the dark about what was truly going on and were treated as experiments and not human beings. Today that would be extremely unethical and many laws can prevent such things from happening.
5) I think that it is possible for an experiment like this to be conducted today, however, I do not think it would be possible in the United States or other first world countries. The experiments violate basic human rights and are considered highly unethical. But if a private corporation wanted to conduct an experiment like this today I think it would be possible for them to do so in a third world country with a corrupt government.
#3 What kind of criticisms can you offer this study?
For this study, I believe the Public Health Service [PHS] gradually loss sight of their objective. Although the PHS is working to control venereal disease to protect human welfare, their methods expanded to goes against humanitarian. The Julius Rosenwald Fund was a philanthropic organization promoting African-American welfare that initially gave financial support to help African-American, however upon conducting tests on the population of 27,000 residents consisting of 82% African American of which 36% had syphilis, prior the testing, the public health officers announce to check for âbad bloodâ which I canât see as an appropriate phrase to use. The PHS determine the difference in social and environmental could explain the high syphilis rate. The Julius Rosenwald Fund discontinue funds when suggestion of a larger scale of extension of the work to break the cycle of poverty and disease in Macon County. I support the Julius Rosenwald in their decision to stop funding because the PHS does not give appropriate treatment to African-American and even attack the images of black Americans that they assured to the Julius Rosenwald Fund that they wouldnât. The PHS upon realizing funding will cease convert their original treatment program to a nontherapeutic human experiment, they did not give approximately 1,400 patients in Macon County the appropriate treatment despite receiving funding from the Rosenwald Fund, and these patients were basically untreated. My impression of the PHS in this case study is not very good. I know the PHS are working to control venereal disease however the way they go about towards that goal is problematic. The patients were left unaware of the study and kept under observation as experimental subjects. When the use of penicillin to treat syphilis was available the experimental subjects were denied antibiotic treatment. I find the PHS in this case study unfair to the experimental subjects, after using them and denying them the treatment they needed even if their syphilis progress too far. The PHS moral judgement comes into questions on conducting these experiments. I believe the crucial problem is that the PHS consists of only physician without any training in medical ethics and none were African Americans that can relate with African Americans.
This is an excellent response. I appreciate the thought that you put into it. I think you’re grasping a themes that will be discussed throughout the course– who so we hold accountable? Here you clearly describe the role of PHS and how things c/should have been different. Well done!!
#5 I believe that a similar study can be done in today’s society even with all the laws and ethics that are supposed to govern the medical and scientific field. All that is really necessary is the cooperation and careful selection of those in charge of the experiment. The Tuskegee Experiment did not happen just because of a lack of laws or medical ethics, it happened because those involved were faithfully focused on the end results and were willing to do whatever they believed was necessary.
This Case Study was very unethical. It was lacking in moral principles and did not adhere to the standards of the medical profession in this time period. I refer to this time period because through the years a higher standard has been developed as a result of experiments like the Tuskegee experiment. When the study was done the requirements and standards were very different for a case study than it is now. The Nuremberg Code 1947, defines the rules of conduct for the use of human subjects in research. This was developed after World War II because the Germans experimented on the Jews. The Tuskegee experiment began in 1947 and ended in 1972. The intention of the experiment was to study the course of the disease, Syphilis in Blacks. Labeling the disease, “Bad Blood,” was wrong because the doctors knew at the time that it was Syphilis, a Venereal Disease in the year 1908. These men did not know they had a venereal disease. They were never given the chance to seek treatment. They did not know that they would be spreading the disease to their wives and children. They were not given the choice of choosing life. This was a bit disturbing to me, the Tuskegee Institute was staffed by entirely African-American physicians and nurses. Regular treatment for the disease was withheld to study how it would progress. Penicillin, an antibiotic was discovered in 1943 to cure the disease but withheld because the men were not considered patients. The is very inhumane. It is amazing how humans can be so selfish and still live with themselves. Although we have benefited a great deal from research treating a human being like a lab rat is heartless and cold.
#4
I believe that some factors that cause the study to stop was, the honesty of some staff that were participating in the study, people who questioned the ethics of the experiment they were performing. I think one of the biggest factors for closing down the experiment was the reporter that brought everything to light. Once the world knew what was really happening to the people that were part of the experiment and how to experiment was operated, the people had to stop the experiment.
#5
I believe that any research that is similar to the Tuskegee Syphilis project will not be allowed to today. There are many reasons why this type of study isnât allowed. First thing first, humans as test subjects is way too much… if something goes wrong a person is life is gone just like that. Also, everyone has the right to say no to these type of experimentsâŠso no test subjects means no experiment. Furthermore, people are more aware of the diseases than they were back in the days.
#3 what type of criticism can you offer to this study
In other to conduct any research a full disclosure should be given to the study participants including informed consent. The study violated human rights.No moral principles among researchers to actually convinced these poor black men just to investigate the effect of syphilis; withheld medical treatment to study the course of the untreated disease. It is like watching a fiction movie, Tuskegee may assume because they are black, human research is unnecessary let’s conduct an animal research. took them as mouses, injected the disease to actually observe the progression of syphilis. This is called Ethical transgression and deception with no respect of human dignity and justice to deliberately withholding information about the study. Human research should produce a maximize benefits, protecting human beings from harm and discomfort and finally give them right to fair treatment. Thank God to the codes of ethics that have developed in response to those atrocities.