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.
What were the factors underlying the cessation of the project?
From the looks of it, the project started off with purely scientific curiosity and inquiry on the effects of syphilis on victims/patients over the course of a person’s life. However as time passed and the need for funding became an issue, things took a turn in the moral compass. Information was withheld from the people that were in the experiments, and were misinformed of the situation.
They all thought they were getting treatment for the disease, but instead were only given enough just to study the disease and it’s effects on the victims. There was almost a unofficial don’t ask, don’t tell policy with the staffs and people surveying the project. The PHS officials kept trying to push for more time and funding for the project, while misinforming other groups in-order to keep the project going.
From reading this article, I can’t condone with it, just because of the fact that it is morally wrong. But, if any useful and helpful information came up from this project, I wouldn’t dismiss it in actually helping to better combat the disease with better efficiency. The only problem is the way the project headed, it didn’t really seem like they discovered much, besides just statistics. Nothing was produced to actually help fight the disease.
Of course, this is just all the opinion of a student reading an article posted by his professor.
3. What kind of criticisms can you offer of this study?
These studies were purely experimental for reasons other than finding a cure but more for comparative research. Ethics were dismissed, and policies abandoned. I think knowing the difference in effects on African American patients could help for a better diagnosis, but if treatment is the same throughout all cases then what is the point? If African Americans were to develop other symptoms that would alter treatment I could see how that could help future cases. I just think they went about the whole thing with the wrong objectives.
I’m not sure if bad blood was a proven connection to syphilis maybe some patients were diseased but syphilis could have just been assumed due to the Olso studies. Could it have been possible some of the men had other infections?
Its hard to come to terms with these studies or form a genuine opinion. What is science without experiments how are we suppose to learn anything without test, trials, and risks. Malpractice and experimental treatments should only be performed on cooperating individuals.
Question 3: What kind of criticisms can you offer of this study:
Reading about this study puts me in the shock and reminds about Nazis experiments with people in the WW II. In my opinion, it was inhuman, unethical and just horrible. I can understand in the beginning when there was no real treatment of the disease available and it was being observational, because there were no precedent of development of the syphilis in African American population. But later, when penicillin became available and did wonders with curing from many diseases, it was a crime against the humanity to continue this study.
I can suggest the following criticism of the study: there was no ethics; the participants were treated as “subjects”, they had no rights, their physicians didn’t care about their subjects’ health, their nurses didn’t advocate about them ( but honestly there was the time when the nurse just followed doctor’s orders), they didn’t get any treatment, they weren’t told the truth and there was no informed consent. The persons weren’t seen as the victims at all. It just so Nazi like approach. Just horrible.
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 today 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.
3. One main criticism I would associate with the study is that the men (the syphilitics and the controls) who were used to conduct it were not aware of what exactly was taking place. Since most of these men were seeing professional doctors for the very first time, they probably thought everything was well taken care of. After being told that they would have been checked for “bad blood”, which was never the case, the professionals were using them in a study which would have benefited others and not the men who had to suffering the pain. The study should have been explained thoroughly to the syphilitics and controls involved and they would have been able to make their own decisions of whether or not to accept being a part of the project. The overall study was conducted in an unprofessional manner.
5. This project could be conducted conducted today if only the patients of the experiment were being told what exactly was going on. Most of these men lived in poor conditions and have never seen a doctor before, so immediately when they were treated, they felt safe and secure about being taken care of a “health professional”.
In today’s day in age people are educated on what causes sexual diseases and the symptoms they may carry. If this was conducted today, I feel like the doctors would present a survey letting the patient know in detail what is going to be tested or what experiment they will be participating in on, and they would have the right to whether accept or deny the offer.
#3 : My criticism about this article would be the nurse not given the men the proper medicine they needed. Even after she was given orders by her doctor to do what was needed to be done, she felt that it was right not to give these men what they needed. Because she made this decision on her own, it could have effected the men more than they already were, causing the disease to become more extreme.
Q3 What kind of criticisms can you offer of this study?
There is many criticisms to this study. The way they conducted the study was immoral. The people that were taken for the experiments were not told the real reason or the cause behind the experiment. This represents the misconduct of medicals and the disrespect of the human rights. It also shows racism and that they took advantage of the native Africans. Moreover, the people had trusted them and were insured that they are just going to check them for their bad blood, which however was not the exact case. This also kind of implements the betrayal to them just for the benefits and conduct of their study.
Hence, this study was not conducted properly.
4. Factors Underlying The Cessation of The Project
The Tuskegee Syphilis Project failed to meet two of the basic principles of any scientific study: Verifiability and Fairness. When The American Heart Association expressed its concerns regarding the validity of the test and its procedures, Dr. Vonderlehr (director of the Division of Venereal Diseases of the PHS by the time of the accusation) remained determined to prove that syphilis had a different effect on the African-American race. This way, not only did the PHS failed to conduct a valid study but also a fair one by focusing exclusively on the data that proved their hypothesis.
However, the main factor that seemed to contribute to the cease of The Tuskegee Syphilis Project was the lack of professional ethic of the people involved in the study. Treating syphilis infected human beings like laboratory rats -not informing them about the study that was going on and denying them treatment- goes against the right to life. Sadly, the study went on for decades despite the criticism and concerns of several professionals, but only stopped when it was brought to the public eye.
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 sought the opportunity for free medical care, treatments, and burial expenses. They were unable to afford medical care or burial expenses.
The PHS personnel wanted to avoid cross contamination of the treated and untreated population. They were trying to be proactive during the syphilis breakout and were aware that the African American population would not seek treatment due to financial reasons.
The Tuskegee staff knew that this was a concern for their community and African Americans would benefit from the treatments. The notoriety would be great for the Institute once the experiment became a success. It also provided a broader spectrum of education for the incoming residents and students in an area that was still ambiguous.
The Macon County physicians wanted to have first-hand experience and training on these diseases. In working with the experiment that would gain all the knowledge needed for successful treatment of patients with Syphilis. They would also receive preferential treatment for medical supplies and vaccines.
Nurse Rivers following orders thinking that she would be helping her fellow African American cohorts, by deterring them from possible side effects from established treatments. Her actions aimed in the great place but not in the best interest of the individuals but more for the African American community in Macon as a whole.
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 today 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.
My answer for question #3 would be that the study was unfair and injustice for native Africans. doctors were treating native Africans as lab objects by not telling them the truth behind the “Bad Blood Test”. Doctors conducted an experiment in were a group of people were not aware of(native Africans), doctors lied by telling native Africans that it was a free blood test instead of a test in were the would determine the percentage of a race in were they’ll be able to find the syphilis infection.
5) I believe this study is one that can still be conducted today. Races are still being categorized of their health issues, but most times its not realistic. For example the study for obesity of minorities are being placed by their but in reality its the environment they live in and their lifestyle
4. Some of the factors underlying the cessation of this experimental project were that this study was an immoral study. First off, the patients did not know what was going on during the study and some medical physicians saw that to be wrong. As well as the main point of the study getting lost to just collecting data for research. The doctors that continued this study were not conducting it for the right reason they wanted experiment data when the point of the experiment was to test how they could treat syphilis in the beginning. Mainly once specific doctors opened the eyes of the media to what was going on that was the biggest factors that caused an end to this experiment.
After reading the “Bad Blood: A Case Study of the Tuskegee Syphilis Project”, I would like to answer question #3 which is,” What kind of criticisms can you offer of this study?”
First off all, I believe that, it was an outrage to the commitment of integrity and equality for all citizens of United States. This means that this study clearly demonstrates racism.
On the other hand, the experiments were applied on poor population who were already suffering from the disease and the study was being conducted without letting them know about the harms and seriousness of the disease. They were provided with wrong information that they are being tested for “bad blood.” This is ethically wrong.
Moreover, their doctors did not have any intention to treat them. They were being used for sake of collecting data. The data for the experiment was to be collected from autopsies of the men, and they were thus deliberately left to degenerate under the ravages of tertiary syphilis,which can include tumors, heart disease, paralysis, blindness, insanity, and death.
Q. 3.
One criticism I can give to this study is Social injustice. The Tuskegee study shows no justice to the African American men, and it was obvious that these men were given treatment that they had no clue or idea of what the treatment was about, except the notion that they were been tested for bad blood. There was no informed consent form which would have explained the risks behind the treatments. The men were unjustly lied to and selected for this study probably because of their race, the area/community they live in, and their economicstatus – which was very low. Secondly, unjustly, because they were the only race selected, brainwashed, and tested on.
Additionally, all the doctors involved in this test knew exactly the risks behind the study but gave blind eyes to the health of the men and went on with their experiment – which of course sentenced most of the men to a slow death. The entire study was unethical and unjust.
3. What kind of criticisms can you offer of this study?
The main thing that I thought about when reading this case study was the lack of informed consent. The subjects were not told the whole truth about the experiment. They were given a false sense of trust and made to think that the doctors had their best interest at heart. I was also appalled by the fact that they had treatment for syphilis that was not made available to the subjects.
3. What kind of criticisms can you off er of this study?
Well, this case study makes me question. “We have no further interest in these patients until they die.” I see this more as a murder. Because these men became infected with a disease they didn’t know existed they are ultimately at fault according to Cesium. Have in mind they had never came in contact with any kind of doctor. In my point of view, when morality, judgement and opinions play a role when treating a patient, medical results are highly questionable.Racial issues still continue today shockingly which makes me question medical proven results in present time. Having this case study in mind, it makes me wonder what experiments the medical field is doing today.
#5-
Research projects like Tuskegee Project can’t be conducted now. In order to conduct research, the researchers need to approve their research model. They have to present their research model and how they are going to conduct it to an ethics committee, also known as an Institutional Review Board. This is a committee dedicated to overseeing the rights and well-being of research subjects participating in scientific studies.
It is also required that the subjects in a research study are provided with information regarding the study. If they are given any medication, they also have right to be informed about it, side effects of it and the outcome. Subjects of Tuskegee project had no idea what was happening to them regarding the research. Informed consent is also required from test subjects. Research in which human subject are in danger of harm, such as in Tuskegee project is no longer allowed in United States. It is also not allowed to withhold any beneficiary treatment from subjects which can cure their disease.
The criticism that i have for what took place in the Tuskegee experiments is that the Afrikan participants were treated as animals. They were exploited just because of their lack of knowledge. People associated with this found it ok to deny the Afrikans the freedom to get treated for a disease that would become an eventual death sentence. I find it very racist that Afrikans were treated this way because they were poor and not knowledgable of the situation at hand. They were used as guinea pigs.
#3 what kind of criticisms can you offer to the study?
My criticisms to this case study is that the people that were in use of the study is lack of knowledge of what they were being treated for, They were treated like a laboratory rats, which the doctor treats the patients with dangerous medicine(mercury) that was painful and cause death. The study was just to conduct information that they did not really receive proper treatment to needed cure the patient after all. Also keep in mind that all the people were taken to the study are all black men. This make me think they are not serious about black people life in this study.
Question 3
It is unclear if the subjects involved had to sign a waiver that stated the PHS had full control over all medical decisions, including the right to deny them treatment. I also believe the study wasn’t broad enough and should’ve included patients who had syphilis and received treatment. Do these men have similar stats to the control group because they have been cured our is it similar to the ones who haven’t been treated because they were infected at some point in time. If the purpose of the study was to see the affects on the blood of African American men and any longterm problems, then they should’ve been more thorough. With that being said I believe the study became unethical, when they denied treatment to men who were infected and use the excuse that the treatment might cause more harm than good when there was no proof of that.
Question 1:
The information gained from this study is the amount of people amount of people in the South that had syphilis and within the African American community during the 1930s. The study was on the effects of the disease compared from different racial backgrounds. Studies were conducted on patients that were either not aware of the disease that they had or any knowledge of the disease itself. The argument that can be made from this study is that they got to see how syphilis work and the effects on African Americans vs white, and the life expectancy of being treated vs not being treated.
3. What kind of criticisms can you offer of this study?
These kind of things should not happen. It is horrible,unethical and inhumane. Doctors are given a huge responsibility and for them to just allow this study to continue for so long is just wrong. It makes me question if there are medical professionals that are unethical to this extent.