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.
Question # 5: Could this project (or one similar to it involving AIDS or radiation effects) be conducted today?
In my opinion, this project or one similar to it involving AIDS or radiation effects could be conducted today if the patients are volunteering for these experiment. I know it’s so cruel and not human when you do an experiment directly on human bodies. However, in some case of diseases, I think this is the only option that can help us to find a cure for it. For example, AIDS is a un-cure disease which has been killed many people and kept going today. It’s does not matter the patients get treatment or not, they are going to die. If patients will volunteered for an experiment, I think we should conducted to help population’s future.
Response to Question #5:
I believe, a project similar to the Tuskegee syphilis project could not conducted today because the patient has more rights than before. As a society, we have changed and evolved over time and along with that so have our rules. The cure for AIDS is certainly being investigated thoroughly, however the experiments that may be believed to be needed in order to learn more about the cure cannot be put on top of the patient without consent because of the legal ramifications that come along with it. We might see things differently in the future in terms of what is justifiably right and wrong for the patient, but as the rules are today probably not.
I am responding to question number 5. Overall this project was completely unethical. When this study took place, as told in the publication, there were no classes on medical ethics. This means the medical professionals did not have any background on ethics. With that said, morals should play a part in this wrongful act. These physicians, as did the nurse knew exactly what they were doing and they covered it up by saying they gave these human subjects “bad blood.”
I do not believe that any research study today could go on as the Tuskegee project went on. In my health care ethics class we discussed this same study. The whole class came to the conclusion that this is morally and unethically wrong. To use human people as subjects and not give them the proper knowledge of what is going on is simply not right. In health care today, there are a series of patient rights which was not given back when tuskegee project was being completed. Also, back when this study was going on, these human subjects had no contact with medical professionals, therefore they had no knowledge of what was being done to them. I believed the subjects looked at the “care” being given and associated it in a positive way. At the end of the day medical professionals are supposed to help people not hurt them. Today, no medical professional or group of medical professionals would be able to get away with such wrongful and unethical acts of practice.
3). The factors underlying the cessation of the project were that it was a new idea, which meant that there was little research done on the topic – progression of syphilis on untreated African American males. This also meant the researchers had to compile little data together. For example, the progression of syphilis had not been studied in individuals of African descent until later.
2.) I believe the major motives for people to become involved in the study is because they wanted to help find a cure for syphilis for patients that weren’t economically able to afford the treatment for this disease. Being able to develop a treatment for a disease and being successful is major goal in a scientist career. Therefore, Paul Ehrlich created a treatment that would help treat many individuals which was used in early 1900’s. As well the personnel in United States Public Health Service (PHS) was created by congress to provide free clinical treatment to individuals in urban areas. Personal working there might have enjoy helping people with low income and people that didn’t have the advantage to obtain medical services. The Macon County, had 36% percent of African American population having syphilis, and was used to as a test called the demonstration program. The Tuskegee staff were all African American physicians or nurses therefore, I believe the staff wanted to help their people because they were the same race because I would do the same if I saw a group of Hispanics that need my service I would help the most I can because not only would I help translate, but also I would be able to care for them. Furthermore, the Macon County motives to join the ” demonstration group” was to help them self since they have never been seen by a doctor in their lives. Also, the nurse Rivers were well knowledgeable about the project and knew that they would play a major role in this group. As like the example given in the text, the African American PHS nurse which was assigned to assist the men in the Tuskegee study she helped the patients by not providing them medical care from the PHS treatment clinics. She was also known for being able to deal with men having syphilis, but also known for being able to keep these patients.
5) Could this project (or one similar to it involving AIDS or radiation effects) be conducted today?
This project or any other similar to it, definitely would not be allow in today’s society because of a little thing known as human rights, also people are not animals, even though some do behave like they are. I know it may still happen secretly by some pharmaceutical company’s or even physicians, but if it were to be made public then they would have a big law suit on their hands or have to answer to the FDA. Although the medical field was still in its development stage during the first half, to the late twentieth century, physicians could have come up with a better way for their method of research.
2. What do you believe were the motives for the people to become involved in the study, specifically: The subjects? The PHS personnel? The Tuskegee staff? The Macon County physicians? Nurse Rivers?
The subjects- the benefits, security and a cure. What they were offered was better than what they currently had.
The PHS Personnel- to gain a better understanding of how untreated syphilis affects black men and the difference in response between white and black men. Basically to study how long it would take for a black man to die from untreated syphilis and how it affected the body.
The Tuskegee staff- training physicians in treating venereal diseases, distributing the drugs, and the uses of state diagnostic laboratory facilities. I believe they were also interested in knowing the affects of untreated syphilis is black men, since there was already a similar study conducted focusing on white men.
The Macon County physicians- I believe their motives were for recognition, control, and interest in the study’s objectives.
Nurse Rivers- interest in the experiment, to feel important and useful, and possibly brainwashed into believing this was for a good cause.
1. Carefully analyze this case. When you examine the paper and the appendix, what information appears to have been gained from this study? That is, what kind of argument can be made for the benefits of the study?
This study was unethical. We now know that studies like this can not be done on humans. Moreover these studies where done on poor black males whom where illiterate and had no idea what was being done to them. On top of that they where being lied to by the doctors saying they where being treated when in reality they where being used as a control for the tests. The benefits from the test that where done was not worth the lives lost. Its sad to see how 600 black males where used as an experiment not knowing them selfs what was being done to them. They thought they where being treated for the disease that they “had”. They where promised hot food and free medical care which back in the day poor people did not have. Lastly, even thought the cure penicillin was founded to cure this disease i don’t think the study should of continued to see what would happen if people where untreated specially if they person the test where being done to had no knowledge of the tests.
I chose to answer question #5: could this project be conducted today? In my opinion this project would be difficult to conduct in the 21st century. People have more rights compared to when this project was conducted. Because our laws and regulations have become more fair it is hard to conduct any projects without violating human rights. Just because there is no cure for AIDS, and the patient can die does not allow the researchers to conduct their experiment. Scientists should find other research methods to achieve the same goal without involving humans.
5) Could this project (or one similar to it involving AIDS or radiation effects) be conducted today?
Ethical standards and moral issues would prevent a similar project involving AIDS from being conducted today. Our modern society would oppose to human suffering, mainly because as humans, we empathize with one another. A person should not be affected by radiation effects for the sake of gathering scientific knowledge, especially if the person is also being denied treatment. The consequences of this project would not only damage the individual, but society as a whole.
What kind of criticisms can you offer of this study?
This study shows how poorly black people were valued during the early 1900’s. There is still some trace of this low value existing today, however, blacks have been making their voices heard and are showing their strength and power in our society. The idea to study syphilis seemed to be a good idea as things and time were changing. Medicine and medical treatments were also improving as a result of various studies. I can see why the Julius Rosenwald Fund would agree with the study of syphilis in the black population. The Julius Rosenwald Fund was in support of improving the lives of the Blacks (African- American) in any way they could and did not anticipate any unethical practice from the Public Health Service (PHS).
It is quite disturbing how those poor black people were singled out to be studied as lab rats and how the results were intended to stamp a stigma on the Black population overall. The study was contaminated by corruption, unethical behavior and injustice to humanity in general. Who would think a governmental agent would indulge in this kind of behavior, especially, using funds from an organization that they knew was very supportive of the betterment of black people’s living conditions and health.
They were no real treatment offered to the subjects, this is another part of the situation that upsets me. I believe, had this study done on the white population in the United States, there would be an abundance of treatment, support and further studies to cure and prevent the disease. The government should not have taken side to single out one group of people and in particular, the poorest of the group.
Thanks to Dr. Irwin J. Schatz who pioneered the effort of change in how the study of syphilis in the black’s population was performed. His effort along with other doctors and reporters caused the study to cease.
5. Could this project (or one similar to it involving AIDS or radiation effects) be conducted today?
There are several “experiments” and studies in the past and in which humans are used as subjects and are harmed, mistreated and misinformed. For instances the Tuskegee syphilis study, the Holmesburg prison study and the Manchuria biological warfare study. The Holmesburg study is about pharmaceutical companies who tested products such as dioxin, radioactive isotopes, etc on prisoners; who were paid money and given special privileges. The study in Manchuria was a biochemical experiment on civilians; who were injected with different doses of anthrax and cholera to determine the disabling dose or lethal.
Some can argue that the Tuskegee study was a study in nature and not an experiment. In fact there was no control group in this “experiment.” The treatment for the syphilis; penicillin was not given to the subjects, in order for physicians to monitor the progression of the disease. The ethical issue with this study is the mistreatment of a vulnerable population, lack of informed consent and failure to treat.
The institutional review board (IRB) exists today to protect research on human subjects. The IRB is federal regulation that has the power to approve, reject or modify research studies on humans. The IRB is “a committee established to protect the rights and welfare of human research subjects involved in research activities” The main responsibility of the IRB is to protect human subjects, unlike in the Tuskegee study. If institutions todays fail to comply, the federal government imposes severe penalties.
Today, informed consent has a legal basis, “every human being of adult years and sound mind has a right to determine what shall be done with his own body.” An informed consent is a full explanation of information provided to a person to determine whether to participate in a research study. An informed consent includes the duration of the study, the possible risks, benefits and much more. A research is voluntary and allows participants to leave the study at any given point and time without penalty or loss of benefits.
A research study under the IRB would not allow intentional harm to a human subject unlike in the Tuskegee study. Ideally a study like the Tuskegee study would not be legally conducted today on either AIDS or on radiation effects. The IRB would not allow a physician to inject patients intentionally with AIDS or expose humans to an extreme amount of radiation to learn the progression of the disease or illness. We have a large enough population with these diseases already and finding a cure is our priority. However, illegal studies are always a possibility.
I believe that this study was very unfair to the Tuskegee men, given that in the 1900s Paul Ehrlich a German Scientist created an “arsenic compound called salvarsan” to treat Syphilis. This treatment could be done by injecting or rubbing on a patient; However with this treatment consists of fatal reactions from patients and was very painful and to add to that it took more than a year to be completed. “Penicillin” was the solution to Syphilis;This is where my disagreement comes along, this treatment was discovered and the Tuskegee men who were experimented on did not receive the treatment for Syphilis. They were not considered to be patients, “they were viewed as experimental subjects and were denied antibiotic treatment”. I believed that the Tuskegee men should have received treatment since they were the ones being experimented on for years.
There were many factors linked to the way this study was conducted that led to its
cessation. First of all, the study was laking the principle of validity from important
concerned organizations such as the American Heart Association. This fact made it
lose its credibility when it came to the data collected and it was clear within the
non sense results from both the experimental and the control groups. Also, the
study did not take the ethics factor seriously when it denied the new treatment
“Penicillin” to the experimental group. The study was a result of personal
motivations or believes of Dr Vonderlehr stating that syphilis affect African
Americans differently than individuals of European descent which is not true
because the Macon study was far different from the one conducted in Oslo’s study.
This last one was retrospective whine the first one progression of syphilis in
individuals of African descent had not been studied. All these factors did not
qualify the study continue even if it had enough support from Dr Vonderlehr and
his successors.
#3
The Bad Blood experiment was highly unethical. The participants were not fully aware of what they were getting into. they were manipulated , and not fully treated. Even when the vaccine was available the participants werent given it.many of the men involved in the studied died and many of them were also unaccounted for. All the participants were black males. I also think there should of been a board of people to determine if the study was ethical or not.
Could this project (or one similar to it involving AIDS or radiation effects) be conducted today?
In my opinion a project similar to this one could be conducted today. However, there will have to be informed consent and full disclosure of the experiment being conducted. One of the major issues with the Tuskegee Experiment was that the subjects were being lied to. This project in my opinion really didn’t set out to study the disease but was conducted to hold down a particular race.
In response of question 5:
In my opinion, In today’s world experiment like Tuskegee is not possible. Because, in this modern era people are much aware about their rights and also know what they have to do if someone are against their rights. Now-a-days patients have to acknowledge about the treatment that they are receiving and also any procedure they need has to be taken in their consent. So, in my point of view, experiment like Tuskegee are day dream and it is impossible to conduct in today’s society.
5# Could this project (or one similar to it involving AIDS or radiation effects) be conducted today?
In the past, the lies that were told to the Tuskegee study subjects made that project unethical and immoral, and the project possibly continued because of the weakness of black people who were illeterate and were unable to read the newspapers. As a result, they could not see what was actually going on. However, similar project could be conducted today but the subjects involved in the project should be fully informed about the experiment.
Based on question #5 it would be difficult or most likely impossible based on today’s laws, regulation, and people being concerned of their human rights. If the project were to be experimented, a lot of explanation and warning would have to be fully understood by the people in the project such as the risks, side affects, timing, benefits, and etc. If something went wrong a lot of law suits and problems towards the government that permitted as well as the people most responsible who conducted the project.
3) The kind of criticisms of this study is that these African-American males that were part of the research were not inform about the experiment. They were not informed about the risk or side effect of the treatment. In addition, they were not given the cure in time.
What kind of criticisms can you offer of this study?
The study of “bad blood”, syphilis was totally helpless for many infected Afro-Americans. That particular study were simply the experiment conducted on population of rural area. That case study took advantage of Afro-American population, who couldn’t afford medical treatment. What’s the worst, that study didn’t have any available funds to provide necessary medications to their participants.
3) This study caused mixed emotions for me because i believe they did not have a primary objective that could be sought out. The African American males in this experiment were guinea pigs who really weren’t well taken care. The simple fact that penicillin was discovered a few years after the start of the study should of made it more interesting. Instead the scientist played with these men’s lives by continuing to go along with their experiment which clearly had a lot of holes in it. If they had took a new turn in the study most likely it would of worked out better with better results.
2.) A response to question #2.
I believe the motive for participation from the people who were involved by being “treated” or not… was health information. Like today concerning HIV, the slogan is be informed know your status. So these people were wanting to know the status of their health and be treating for any or everything. This human experiment was under the guise of this health program. The United States Public Health Service in my opinion at that time wanted free subjects to perform as lab rats in their experiments. What better population than the least cared about race, who was uneducated enough not to be able to read and ask questions. These are people who were so poor most have never been under the care of a physician and welcomed the consideration and care they were getting. It was probably very easy for them to participate in the study because it probably felt more comfortable and trusting to work with people who were of the same race. These black physicians and nurses also probably instilled a since of pride in them for their people for attaining such status to be able to interface with them in such a professional manner. As for the Tuskegge staff, Physicians and nurse rivers the motive I think was pure notoriety for the organization for doing something good for their community, and also they felt like it was their contribution to science. Not to mention jobs were in the south let alone for black nurses and Doctors so economics again played a big role.
Could this project (or one similar to it involving AIDS or radiation eff ects) be conducted today?
I think yes. In my opinion there are a lot of secrets projects, because we have too many new deseases around the world, but I we analyze in a cold mind mode, we realize that the focus of main health problem come from de poorest country in the world. A long time of my life I have believed that some of the most terrible deseases are ways to control those country where people live in the extreme poverty, and they just know how make a lot babies. In others words, the population increase rapidly, which become a big problems for the rest of the industrialize countries basically, because the people want to emigrate.
what kind of criticism can you offer of this study?
as I was reading the article I felt how racism and discrimination play such a big impact in the society. some scientists mentioned that social and economic status can be the cause of that disease. if you are living in poverty, you have a dirt floor, no plumbing, and poor sanitation you’re subject of getting Phyllis disease. remember we have whole lot of poor black people than white people. study in the Macon country revealed that 36% of African American population had syphilis. that is a very huge amount of black people. how true that test is. the result might be to attack the black people to make them feel inferior to the whites. I read in the article” in the light of the discovery that African natives had some rather unique diseases”. Dr. James Lucas said the Tuskegee study was bad science. DR. Joseph Earle Moore said syphilis in the negro is in respects almost a different disease from syphilis in the white. same disease but different reaction on people. isn’t it racism and discrimination. the medicine were not helping anyway, it caused another problem.