Tuskeegee Study Wasn't the Only One....

Saw this on the NPR website today.

http://www.npr.org/templates/story/story.php?storyId=130266301&sc=fb&cc=fp

During routine in vitro fertilizaiton procedures, surplus embryos may be preserved by freezing or discarded. This raises the issue of what to do with embryos not suitable or desired for implantation. To date, implantation of embryos that have been biopsied using PGD, then frozen, has not lead to successful pregnancies. However, the technical challenges are being overcome.

Is using pre-implantation diagnosis for "family balancing" an acceptable practice? Is using PGD for selecting offspring of all one sex acceptable? Are there any differences between PGD for this purpose and those techniques that sort sperm with Y or X chromosomes?

Some chronic conditions can be very expensive to treat. The lifetime cost of treating a person with beta-thalassemia is several hundred thousand dollars. Should cost be a factor in deciding whether to pursue pre-implantation diagnosis? Should insurance companies be allowed to offer inducements to parents to pursue PGD if there is a family history or are they are seeking in vitro fertilization?

If the procedure were available, should deaf parents be allowed to select for a child who will also be deaf?

What if a more mature couple wishes to have a child but is determined not to have a child with Downs Syndrom? Is discarding embryos with trisomy-21 better than aborting after a diagnosis has been obtained during pregnancy?

Does the ability to prevent implanting an embryo that would develop a disability or disease suggest that persons with disabilities should not be born?

To what extent should the nature of the disease influence the availablility of pre-implantation diagnosis? Consider: persons homozygous for for cystic fibrois or Duchenne's Muscular Dystropy will develop the disease. Symptoms begin early and significantly reduce the quality of life, often leading to premature death. In contrast, individuals with an allele for Huntington's disease will not experience symptoms until later in life. Further, persons with a gene for breast or bowel cancer may not develop the disease at all. Preventative screenings for both cancers (mammograms and colonoscopies) are available. Who should decide: the government, voters, or should this be a private matter?

Is it acceptable for a sibling to offer bone marrow to another sibling suffering from a blood disorder? Is it acceptable to create a child who can donate cord blood at birth for the same person?

Great job, bloggers! Now, on to our next blog topic. I will be doing the posts this time; you will pick the posts you want to respond to. The next posts are a series of ethical questions regarding stem cells and in vitro ferilization. The blogging period begins Thurs. and continues until the end of the quarter. Just like last time, you can't post more than twice per day. You might want to pick a conversation you are interested in, and keep checking back to see how others have responded to you, or you may want to chime in on many topics. Enjoy!

Did they really have to "study them to death"?

The Tuskegee Syphilis Experiment is widely known as a travesty among current populations within the United States. During the experiment, around 400 Black Men were contracted in to a study in which they were told they had "Bad Blood" and not that they had Syphilis. As the experiment went on, there was never any intention to tell them that they weren't actually being treated for this medical study, and there also wasn't any intention to inform the men they were being watched for Syphilis. During the study, the ending goal quickly changed as the cure for Syphilis, Penicillin, became available. These men were to be watched to see the acts of Syphilis on the human body until death. My Overall Question, is why do you think the researchers let these "patients" die off? Couldn't they have at least evaluated the subjects until they were close to death and given them the cure? I know this was a time where Blacks were not regarded as highly as others but really? REALLY? There was no reason for the subjects to not know they had syphilis, and to not know there was a cure. Obviously, the researchers would've known that an eventual effect of Syphilis is death.. Why let the Syphilis progress to such a point? Logically, there should've been a sensical stopping point within the research. Another Appalling fact, is that while procrastinating the spread of medicine like Penicillin to these people, Syphilis would spread even more to the wives, and children of these men.

Even as this research could've been valuable, the ways in which the data was achieved was extremely unethical. During a time of racism, and no laws regulating Consent Forms, it's logical that these 400 men didn't know what they were getting into, but to let them die for it when there was a cure? MEH,, not cool.

Tuskegee experiment gone wrong? I don't think so.

As humans, we are all aware that everyone, and I mean EVERYONE, has judged upon someone's abilities, back round, and traits based off of their ethnicities at least once during their lifetime. This form of judgment that can often lead to cruelty is what we define as "racism". For forty years, an experiment called. 'The Tuskegee Study,' that was only supposed to last for about six months, dragged along its dark path up to the point where doctors, general surgeons, and nurses decided it was okay to perform dangerous, life threatening studies upon poor black males. These colored men we're living in one of the poorest towns of Alabama and had the highest rate of syphilis during that time period. Clueless of what type of harm the experiment would bring upon them, about 700 males participated over the course of forty years thinking that they were about to get treated for "Bad Blood" and receive medical benefits due to their cooperation. In one of the articles, it was mentioned that most of these men (whom had families) were eager at the thought of free medical exams that as long as they were eligible for the experiment, they immediately went over to participate.

Here's where the problem ignited. Doctors and surgeons' goal in the beginning of the experiment was to find a cure for the black community who were constantly suffereing from syphilis. However, as the cost for further continuing the study increased, they were no longer able to afford drugs that might be able to cure them of the disease. In turn, these people who had no right in making the decisions on their own about who lives or dies, made up their mind that they will continue the study as an experiment to see the effects of syphilis in these poor men rather than trying to treat it. Even after penicillin was discovered as the first and foremost cure for syphilis, doctors and nurses did everything to make sure the participants wouldn't be able to get a hold of the drug. As much as this was their desire to see the effects of the disease, it is considered murder and their race had played a part in their decision making process. As soon as the official decided it was ok for them to keep secrets from the participants and allow the disease to persist in some of the individuals, they were determined to see the dying process out of curiousity. As one of the PHS officials said, this experiment honestly didn't do anything to get them closer to their original goal. Now that we know that the experiment could've been terminated at the start when medicine was no longer purchasable, it's time to determine what was truly morally wrong about this experiment. Did the officials that carried out this experiment truly further carry on this experiment thinking it would benefit future studies by looking at the effects of syphilis in patients and recording down useful information or was this unethical experiment carried out for too long by heartless people knowing that it would not greatly benefit medical research? Also, think about if the officials would've made a more 'moral' decision if the same problem aroused in a rich, white community.

Patients side

After reading the information on the Tuskegee syphilis experiment I was of course very disturbed and saddened by what happened to these men. But being black myself I cant help but think about if I was a black man back during the time when the study was going on. I would have had pretty close to no rights and nothing going for me. I would have been a sharecropper struggling to make ends meat everyday. At the time, if someone came to me and asked me to take part in a study and told me I would get my medical bills, my meals and my burial insurance for free I would probably do it. Try and put yourself in the shoes of a black man back during the time of this study. Think about what you would have going for you and what you can gain from doing this study. Does this change your mind? What would you do?

A Precedent set

We can all agree that this study was not very well monitored by the government, and the horrific things that were being done had just slipped under the radar until the story was broken On July 25, 1972. The most disgusting thing to me was the fact that this went on within my parents, and grandparents life time. The fact that a study like this could go on, and not be caught was very frightening to me, but in a sense it had to happen eventually. Our government would never realize that they need to keep a careful eye on the scientific community unless they actually have evidence to support this claim. Not only would they not realize it is a problem, but also for the government to get funds to support the Public Health Service and the monitoring off studies like this, they need a study like this to show the American citizens how necessary it is. I am not happy the study happened, but I am happy that it was exposed for what it was, Irresponsible scientific research. I believe this study, widened the eyes of America. We cannot trust the word of every doctor or scientist, because, though there are those out there trying to help human kind, others are willing to do whatever they can to get that fame and attention. That kind of scientific advancement is what we need to be careful off as citizens, and as a country. It all comes back to the idea of Risk vs Benefit. to what lengths are we willing to go, for a scientific study? The Tuskegee Study made America more conscious of this idea of Risk vs Benefit. We began to question things such as stem cell research. Yes they are trying to help people, but what ethical dilemmas are they facing along the way. Citizens now are more aware of how studies are conducted, and exactly what type of research goes into science, not just the results. In retrospect I think a great Precedent for science was set, when the Tuskegee study was exposed, and I ask you to think about, how do you think science would be different today, If studies such as the Tuskegee experiment and the Nazi experiments were not exposed, and science was left unmonitored by the Government? Would we have more advances in Medical research? would people be unwilling to take part in studies? I hope this all makes sense...

What was the point again?

I found the experiment to be very much favorable for the black men in the experiment. It is common sense that if there was no cure for it at the time, there was virtually no harm done by not doing anything about it. In fact, observing something they had no control over could only benefit science and research for an eventual cure. It is also true that the "patients" were treated for other illnesses for free. These men would never have been able to pay to go to the doctors before the experiment. So in reality, the men's life expectancy should ideally increase.
However, when penicillin was available in 1947, the men were denied of it because "They had to go on with the experiment." So let's get this straight, the point of the experiment was to observe untreated syphilis in order for you to have a better understanding of the incurable disease so that one day you can use that knowledge to cure it. But when the cure is available, it is still necessary to observe the disease? In order to do what?
At this point, the experiment not only has zero value/impact on society but it is also considered an act of racism towards blacks. Yes, in the beginning there was segregation and all of that particularly in the south but this experiment lasted up until 1972. And for those of you who don't know, the Civil Rights Movement was long gone by this time.
It started out harmless and ended up fatal.

Was this an attempt to "get rid" of the minority in Tuskegee?

It was said that the reason for this study was to record the history of syphilis in blacks. Most of the people being tested were black share croppers who were poor and illiterate... i dont see how these men wouldnt be considered a minority in this case. It isnt just a coincidence that they didnt ask wealthy, males who own lots of property to contribute in the expirement. Racism is definately a key factor in everything going on in this study, no doubt about that. Tuskegee wasnt only known as the "Black Belt" for its rich soil, but also for the number of black sharecroppers in this region. So this gets me thinking, did the people who ran this study not like black sharecroppers being the backbone of Tuskegee? Was this expirement an accident or did they actually mean for this many black men to die because of the way they were overpopulating Tuskegee? It wasnt as if these men were asked and if they said no they just moved on to the next person.. many of these men were bribed with "medical exams, meals on exam days, rides to and from the clinic, and free treatment for minor ailments." So this proves that the intent of the study was wrong to begin with, becasue if none of these men were signing up for the exams bribing them is clearly unethical. So the question still stands at was the study originally meant to get rid of the black sharecroppers who began to over populate Tuskegee?

Singling out the Racism.

One of the most startling things that I discovered was that the men who had the disease and survived through the duration of the experiment were so deeply infected with the disease that it couldn't be treated. During the test however the treatment of the subjects was somewhat ethical. They were given proper food, transportation and health care for diseases other than syphilis. Their funerals were also provided for after proper burials. The disease at the time was untreatable and therefore the provisions stated above were luxury to the uneducated and poor blacks at the time. In fact the good health provided by the scientists in all other areas than the disease probably elongated their lives. The racism and the retaining of information about the discovery of penicillin are the two ethical faults in the study. Disregarding the discovery and withholding of penicillin to the subjects, does the good treatment of the black subjects outweigh the racism of only testing the disease on African Americans? In other words, because the subjects were better taken care of then they would be at home, does that make it okay to exclude white Americans from the study?

Just to play devil's advocate...

Yes of course what was done in the Tuskegee Study was completely unethical for todays standards. Sure, back when the case was being done (1932-1972) many individuals could have protested it's moral value. However, we have to look at the time in which the case was conducted. Society was much different than today, and racial inequality was clearly accepted with communities. Not only was this a study of African American Males, from the south, but the majority of these men were illiterate, and were not adequatley informed about the study. Segregation and racial descrimination was all over the country during this time, especially in the south. We can see an example where certain people felt they had no choice but to participate in the study, like a nurse from one of the articles we looked at. She said she felt she had no other option but to 'follow the doctor's order'. I must say, that I do sympathize with her. In the example of the Nazi scientists performing expiraments on some of the forced labor camp victims, even some of the Nazi leaders knew what they were doing was wrong. I'm not exactly sure where I read this, but one Nazi leader did not follow the orders he was given because he didn't believe it was fair. He was then put into a forced labor camp, just because he DID have morals!! Surprisingly, I wasn't too shocked by this. And personally, I'm not sure what i would do if put in that situation. Of course, looking back on these events in hindsight we have a clear opinion about what we would do, we wouldn't even think of participating in these atrocities. But putting yourself in the shoes of these people, What would you do? would you be able to stand up against authority even if it means putting your life on the line? Or would you just go with the orders you receive, in an attempt to save yourself?

What is this world coming to?

I see this whole experiment as an attempt to target the black population. To me this whole experiment seems pointless. The men that participated were told little to no information. An article said, "By the end of the experiment 28 of the men had died directly, 100 were dead of related complications, and 19 of their children had been born with it." These doctors telling them that they were being treated with "remedies" was a lie. In fact they were being treated with aspirin. Quite the cure isnt it?? I see this as an attempt to eliminate a chunk of the black population in the area also as an attempt of torture. Even after a cure was discovered the men were denied the opportunity to take it. Sure they were given free hospital treatment and meals, but it also came with the price of being buried in the ground for eternity which they were not aware of. Even a doctor said that if they knew the price of death was attached every "darky" would leave the experiment. My question is was this an act of torture or was this a genuine experiment?

How Wrong Was It?

Clearly the Tuskegee study is an ethical dilemma. There are many people who are and were angered by the actions of the doctors who performed the experiment. On one of the websites it said that president Clinton made a formal apology to those who were affected by the study even though he himself was never involved. However, one of the nurses who worked directly in the study said, "We were taught that we never diagnosed, we never prescribed; we followed the doctor's instructions!” The website went on to say that she genuinely felt nothing ethical had been amiss.

So, years after the study President Clinton saw the error in the ways of the doctors but those directly involved saw nothing wrong with it. This reminds me of the date to homecoming discussion we had in class. My question is: Taking into consideration the racial prejudices and different ways of thinking of the time, did the people in charge realize what they were doing was wrong or are we just judging them because we can see the whole study and they had to make decisions without knowing what they effects would be?And in the end does the answer to that question change the way you view just how unethical this study was?

Are There Exceptions?

The Tuskegee Case set a precedent that participants in a case study have the right and MUST be informed about every aspect of the study. In some cases, I feel that this is right, especially considering scientific experimients that could potentially cost lives. However, in some cases, complete knowledge of the study could bias the participants and lead to inaccurate results. So, do you feel that there should be certain exceptions to the rule or should participants in studies ALWAYS be informed of every single detail? Also, can the government play a role in this? Do you think the government should be required to review all scientific experiments?

The Tuskegee study parallels the studies done during the holocaust by the Nazis as both studies were targeted towards specific groups without with out consent and occurred during a racist period. For example, the Tuskegee Study was directed towards blacks and the Nazi’s targeted Jews, gypsies, homosexuals, and the mentally retarded. According to Pbs.org, the Nazis “performed these studies without the consent of the victims, who suffered indescribable pain, mutilation, permanent disability, or in many cases death as a result” similarly to the victims of the Tuskegee study who not only suffered pain and death but also infected their wives and children. According to infoplease.com, “The PHS did not accept the media's comparison of Tuskegee with the experiments performed by Nazi doctors on Jewish victims during World War II. Yet the PHS offered the same defense offered at the Nuremberg trials — they were just carrying out orders.” The article continues to add, “A black nurse, Eunice Rivers, was a central figure in the experiment for most of its forty years” and she claimed, “we were taught that we never diagnosed, we never prescribed; we followed the doctor's instructions!” Are the people involved in the experiment equally as guilty as the Nazis or are they justified for following the doctor’s orders? If so to what extent should the people be held accountable for their participation or to what extent should they follow orders?

The point of it all

The experiment in the beginning wasn't very unethical, granted the race specification and the lack of information is twisted. However the research had the possibility of advancing medical science if the findings were conclusive. The study was done at a time when there was very little understanding of medical sciences and therefore the experiment was not unethical, as sometimes a shot in the dark leads to findings. The Tuskegee study became a travesty when penicillin was discovered. The men involved were uninformed that they could be saved and basically the scientists were killing all of these men without reason. If syphilis could be treated then what was the reason to continue studying it? The disease would be obsolete at this point and therefore the experiment should have been stopped and the men should have been treated. The fact that they were not treated demonstrates either the reckless scientific mindset or the extreme racism of the scientists. The manner in which the survivors were treated was very appropriate as they along with their families deserved to be compensated for the horrible mistreatment, perhaps even a greater deal of compensation is due.

Should they have stopped?

There is no doubt that this was a racist time in our country's history. I believe that this study was terrible but, only after the cure of syphilis was found. Really, in my mind, the notion that these men were just being studied to see the long-term effects of syphilis was grotesque, but at the time the study was started there was no treatment for it anyway. The scientists were not preventing them from being cured of this disease. Granted, the participants were not informed on much. They only knew they were being "treated" for "Bad Blood". It said on the Tuskegee website that "Bad Blood" didn't neccesarily even mean syphilis back then. It also could mean fatigue or anemia. Basically, though, since the men had no other option for a treatment of syphilis at the time of the trial's start, I believe the scientists weren't doing anything that was "ethically unjustable". My question is why the scienists continued the study once the cure for syphilis was discovered? Why didn't they inform the participants that they could be cured from penicilin? This is the unethical act.

why perform experiments on those who cant read what their getting into?

during the study many of the patients where unaware of what they were being tested for, and blindly took a leap of faith that they would be treated for their bad blood. The patients in the trial also never received the actual cure and many were killed during the experiments and many more became infected. If the patients knew about it they would think twice, the doctors running the trial
gave the patients incentives like free meals and rides to the clinic and they also gave them cirtficate of thanks from the surgon general after being apart of the study for 25 years. after the study ended the patients received no treatment with the cure and had many infected family members or other human beings, shouldn't we have properly informed them of the study regardless of who they are?

Tuskegee Syphilis

This experiment took place during the 1920-1930. The time period when america was the most racist. Along with that, america was developing and scienctists where searching for the cure to syphilis. These scienctists acted in an immoral way, they lied to the black men and told them that they had "bad blood" and that they were being treated for it. Where as they were just testing on them and trying to find a cure for syphilis. In other words Human Beings were being treated as Laboratory Animals. Even though they told them that they would provide them free medical care, it was a lie, they would label it as "final chance for free check up", but they were just testing and experimenting on them. The doctors targeted the uneducated men to undertake this experiment. When this spilled, it brought a horrible name to science. Even after they had found the cure, they refused to give it to the people who they experimented on, this proves that they were immoral in treating them in this way and experimenting on them like they did not have any rights.

"The study was meant to discover how syphilis affected blacks as opposed to whites—the theory being that whites experienced more neurological complications from syphilis, whereas blacks were more susceptible to cardiovascular damage."

If this is the true experiment, it seems that there would have to be black AND white men tested. So why would the media not promote the white men being tested as well? Is it because they are not poor and undereducated like the black men were? And if so, does this make it more or less ethical?

Was there a need?

Agreeing that during this time period there was major racism going on still does not justify the cruelty of the researchers of this experiment. By choosing to do this test on poor black men, it dehumanizes them. Was it an unethical to perform these tests on poor black men without their knowledge?

Given the time period of this study, the 1940's and after, African American men of the lower class were most likely being drafted into the army to fight in World War 2. Although this study started in 1932, the Second World War begin not too long after. With this in mind, African Americans were most likely ecstatic to be apart of a science study and receive free medical help. The set back is that these men did not realize they would need so much medical help or how extreme the study was getting. The article from infoplease.com stated, “The true nature of the experiment had to be kept from the subjects to ensure their cooperation.” I understand this reasoning to make sure the men stayed with the study or it would not have any meaning. What I am questioning is why they were not removed from their family and daily life style to ensure those they are around to not contract the disease? The article also stated “40 of their wives had been infected, and 19 of their children had been born with congenital syphilis.” My question then is if this was part of their study and they will treat those affected with the disease down the line with the widely known cure of penicillin or if they will let them live with the disease as a struggle in their own life in a very sneaky and unethical way of conducting a science?

Qeustion concerning the saftey of experiments today

Judging by the time the experiment took place, the United States was going through extensive amounts of racism. However, that did not mean that scientist could take advantage of the time period and test their experiment on African American’s who at that time were not give the same amount of freedom as others were. The question that really concerns me is that if casualties had occurred and as stated by the article, “the test subject were not aware of the experiment's title”, would it be that it is still hazardous to contribute to expermiments these days?