Hello to one and all. Thank you for an interesting class discussion.
As we discussed in class, the Federal Government has intervened and introduced regulations to protect the vulnerable populations. The most recent guidelines are the Federal Policy for the Protection of Human Subjects also known as The Common Rule. However, according to the U.S. Department of Health and Human Services, "[h]uman subject research conducted or supported by each federal
department/agency is governed by the regulations of that
department/agency. The head of that department/agency retains final
judgment as to whether a particular activity it conducts or supports is
covered by the Common Rule" (http://www.hhs.gov/ohrp/humansubjects/commonrule/). The problem with that for me lies with the department head making the ultimate decision. There is an old saying, "who will guard the guards?" Who will put check and balances on him/her?
We want to make profound differences in the world. We have seen though that sometimes despite the best of intentions, things can often go wrong. We have hindsight and foresight beyond previous generations, therefore we are in a more educated position than our predecessors. How are we going to use this education to take preventive steps to reduce the chances of ethical violations such as those that occurred in the Tuskegee Syphilis Experiment, Willowbrook Study, Thalidomide and the likes from happening in the future. As future leaders, lobbyists, politicians, advocates etc, what can we do to safeguard the vulnerable population realizing that they need protecting but at the same time we do not implement measures that are so stringent as to stifle medical and clinical research? After all, human test subjects are vital to advancement in medicine and research. How do we achieve the greatest good while doing the least harm? (Although my preference would be to do NO harm. I know that is not possible though.) Do the current guidelines provide the necessary protections for the vulnerable populations? With the great advancements being made in science and technology, can you think of any preventive guideline that can be added so as to factor in the rapid advancement being made?
I know I have posed many questions, but some of them are just food for thought. No need to feel overwhelmed by them. Answer as you are led.
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Good morning all. There were two comments I wanted to make in class. There is great mistrust especially in the African American community for the medical profession, medical research etc, in part due to the Tuskegee Syphilis Experiment, which still continues today. http://www.sciencedaily.com/releases/2009/02/090202174829.htm
The other comment was concerning Nurse Rivers. The excerpt that we read only mentioned Nurse Rivers briefly. But the context in which she was mentioned, implied that she was one of the factors that kept their "secret" quiet. Further reading of "Bad Blood", documentary and other readings shows that Nurse Rivers, an African American nurse, was fully aware of what was being done to the men in her charge and agreed to assist the doctors as they continued the ruse of "treatment" to the men. That was another reason that the men agreed to continue in the study. After all, if "one of their own" told them it was ok, then it was must be ok. Right?
The last participant died in 2004 and the last widow receiving The Tuskegee Health Benefit Program (THBP) died in 2009. It was only after the class action law suit that off-springs and spouses of the participants were given free medical attention under THBP.
Here is a link from NOVA about the Tuskegee in case you guys might be interested:
http://documentaryaddict.com/The+Deadly+Deception-9274-documentary.html
I don't mean to keep harping on Tuskegee especially as there are other ethical violations but it is only when we fully understand where we are coming from that we can correct our mistakes and move on. Hopefully, with this awareness, we will have the drive to advocate to the best of our ability, armed with information, foresight and predictive reasoning to affect the necessary changes need.
Enjoy your weekend.
Thank you for the interesting class discussion along these two points.
Though a little overwhelming, there is a lot of very good information in the additional readings you posted. The one additional article I found interesting was the one about African-American parents distrusting medical research. This I believe is a very unique and untapped factor in discussing the effects of the Tuskegee experiment. We know now that the Tuskegee experiment was inhumane for many reasons, but the intentions behind the experiment initially were to find a cure for a health issue confronting African American males. If African Americans aren’t willing to participate in these studies, then less medical advances will be made to cure diseases targeted at us. Of course, the distrust does come from a valid place on behalf of the African American community for both the mistreatment done in the Tuskegee experiment and the cell replication situation we covered in class. Still, by not participating in medical research, the African American community faces a double edge sword situation where we won’t allow ourselves to be helped nor hurt by medical experimentation.
Thank you Simonne for a terrific class, topic, and blog post--and for the additional information. I appreciate your suggestion that we must always remain vigilant: "aware, armed with information, foresight and predictive reasoning..." And I also appreciate Spencer's observation about the dangers of concluding that medical research/medication/medicine is either all-evil or all-good. Keeping vigilant means keeping a critical eye open at the same time keeping an open mind to that which we do not know fully. It is difficult to do this when we get so much misinformation and DISinformation (purposeful misinformation).
In my day, there was the injunction to "question authority." I think that is a good principle, and is in keeping with Simonne's advice about being awake/aware.
With that in mind, I share with you the following paragraph I found particularly interesting. It jumped out at me. It is from the Jones article, bottom of p. 179 and top of p. 180:
“If penicillin failed to change Dr. Heller’s views on treating the men, he was equally unmoved by the moral concerns about human experimentation that developed during the Nuremberg trials. He saw no connection whatsoever between the Tuskegee Study and the atrocities committed by Nazi scientists….He did not make any associations between Tuskegee and Nuremberg, Dr. Heller insisted, ‘because to me there was no similarity at all between them.’”
In keeping with the injunction to question authority, two aspects of this disturb me: 1) If, in fact, Heller did say this, then his logic is so circular: There is no connection between the two phenomena because there is no connection between the two phenomena (how is that an argument?); and 2) I wondered if in fact, if Heller actually put forth such a circular position--or does it appear that way because of how Jones (the author) framed it?
Of course, this does not take away from the questionable actions of Dr. Heller with regard to the study. But it does suggest that authors have almost invisible power to frame a particular version of reality.
Simonne has introduced the broad question: how can we protect individual subjects while still pursuing cutting edge medical research that may benefit everyone in the future? But she also raises a narrow question I hope we will not overlook: given that certain populations are inherently more vulnerable (prisoners, minorities, children, etc.) can the historical record help us identify certain conditions that make it more likely ethical violations will occur (so that we can hopefully avoid them)?
I am always astounded that in replications of the famous Milgram study, subjects were so much more likely to follow the orders of experimenters to deliver high voltage electric shocks to people when the experimenter wore a white lab coat instead of a sports jacket. That speaks to our reluctance to question authority (the very thing Prof. Waterston just told us to do!) but that is just one component. What other assumptions do you think people make when they are swayed to violate research ethics, become bystanders to allowing violations to occur, or even become unwitting victims of unethical practices? What cultural conditions tend to be present that allow it?
And, if you are able to come up with a list of things that make it more likely that certain groups will be taken advantage of, how can we do better? We can pass a law that I have to make you explain the protocol back to me so that I'm sure you understand the research in which I am asking you to participate. But I can't legislate whether you swoon when you see a white lab coat.
Thank you for your post and for these resources, Simonne.
I searched for more recent examples of unethical human experiments to see where our existing guidelines may be failing. I did not find a lot of information on that, but I came across this article, describing a 1999 experiment at Duke University, shut down by the Federal Government because of it’s potential to cause harm to human subjects: http://www.washingtonpost.com/wp-srv/national/daily/may99/duke12.htm
Bearing this article in mind, I think that existing guidelines may suffice and we may develop new ones to keep up with technological advancement. However, it is more important for us to scrutinize the enforcement of such guidelines; for it will be of no use if we develop guidelines that are all but weakly enforced by appropriate government agencies.
Further, I hope that we get to expound on the racial dimension of the Tuskegee Study. In this regard, there are two questions that bother me: Why weren’t Whites participants in the study? If we agree that the intention of the study was to establish an understanding of a major health crisis, why are we not bothered that Whites and other minority groups were not represented in the study? (Of course, the participation of these groups would not have made the study any less amoral). Let us take a moment to talk about this. I believe that our answers to these questions can offer an insight into what I consider to be the most difficult of Simonne’s journal questions, question 2, on the intended and unintended consequences of the study.
Thank you.
Thanks for the great blog post Simonne! Although I couldn’t make it to school the other day, I wish I could have because it seems as though you all had a great class discussion.
In this blog post I found your opening questions regarding who “guards the guards” of particular interest to me. Through the work I have done for my senior thesis, I have learned a lot about the idea of government accountability, and I think this concept is very applicable to the question you posed. Accountability mechanisms essentially seek to make sure people with power exercise their power in a justifiable way. In one article I read, accountability is described through two concepts, answerability and enforcement. Answerability is simply transparency, where an individual with power keeps those he or she is accountable to informed on the decisions they are making, and how they justify those decisions. Depending upon what is learned from the process of answerability, enforcement seeks to either punish those individuals who have done wrong or reward those who have done well.
Bearing this in mind, I believe an important part in answering the questions of who “guard the guards,” and also how we can safeguard human research against ethical violations, lies in the successful application of this concept of accountability. Although there are other factors to consider, I believe either the development of, or the proper maintenance of, accountability mechanisms is essential in taking the proper steps towards overcoming any and all obstacles regarding the prevention of unethical research practices. In order to move forward from the ethical failures of our past, the most important thing to do is to first evaluate current accountability mechanisms to make sure that they are as strong as possible, otherwise any changes that are made in the laws or procedures regarding human research are pointless because there will never be any assurance that those changes are being followed properly.
Thanks for a great topic Simmone.
I would like to speak to both Spencer's point about the double edge sword by expanding on the Milgram experiment Prof. Stein mentioned. First, however, I would like to say that the Tuskegee experiment was a disgrace to science. I made this realization when the programs administrator refused to end it with the scientific community's discovery of penicillin. Why do further research on the effects and a possible cure of syphilis when a proven one has been discovered? Because of this, I believe the experiment was a cruel curiosity of the symptoms and damage the disease has on African Americans, and nothing more.
Now, I do believe it is crucial to have guidelines that protect the rights of those being studied (and as James mentioned, guidelines that are practical and actually enforced), but, by the same token, the findings of the Milgram experiment added an important dimension to our understanding of the power and danger of compliance. The research methods were unorthodox and extreme, but provided much needed insight. Without researchers willing to challenge and research the uncomfortable, how are we to develop a true understanding of the most complex of problems? Moreover, while the psychology community condemned the research, all those who were involved said they would do it again if given the chance (proof that no real damage was done). Of course, We must find the correct balance between the rights of those being studied and the progress of science and technology. While I will offer no solutions here to finding this balance, I believe Spencer's concerns speak to the heart of the problem in a more global sense: how do we expect to enhance our quality of life without the courage to make mistakes. Of course, our efforts need to be precise and guided by the upmost scrutiny, but we cannot let the "what if" question disable our ability to progress
Hello Everyone,
I love the topic for the class Simonne very thought provoking. There will always be this great debate about science outweighing human life. I feel that finding a pragmatic ways such as, taking into account the stakeholders, finding a way to understand the needs of the subjects are only the beginning steps. There will always be a sense of human error because people write the ethical laws.
The process of codifying the ethical laws will come with the advancement of research. I do not believe everything that is an ethical violation is in the books, codes, and oaths of this world. There are some necessary atrocities such as, Tuskegee, Willow brook and the practices of Nazi Germany to change the criteria of an ethical violation. I pose these two questions: How does one determine an ethical violation? When changing policy does one look at the good or bad of past events?
Great class, Simonne!
Upon reading that article in Science Daily about the fact that there is a great mistrust in the African American community (as well as other communities of color) because of experiments such as the Tuskegee Syphilis Experiment, it bore a striking resemblance to the mistrust in our legal system due to negative experiences of the community at whole. How do we nurture these wounds that have manifested throughout time in communities of color? We can quickly jump to reformation of some kind- changing legislation and ethical guidelines- but would that address the real issue at hand? Or would it just rebrand the issue with some fancy, "safe/ethical", neutral-based language, leaving us dizzy with some semblance of change?
We can't change anything until we change the power behind such institutions. If the power has been in the hands of those who take advantage of the vulnerable, the only way to change anything is to change the hands. James posed a question in regards to why there weren't any White participants in the study, and I'm sure we all can think of a million reasons why. But here's one: it's much easier for those in power to dehumanize a population that isn't their own. When a community has been and continues to be disenfranchised because of power imbalances, this isn't hard to fathom.
I'm sure I'm preaching to the choir here, but unless we begin to get the power in the hands of those who represent the community at-large and not the small community that has held the power up until then, we can begin to see some real changes and improvements in science, law, and society.
Adequate representation and enforcement of guidelines and such are what will ensure (or at the very least increase the chance) that ethical violations such as those from the TSE shan't happen again.
Much love!
Professor Waterston, Your last statement, "But it does suggest that authors have almost invisible power to frame a particular version of reality," I think is of paramount importance to our discussion. When reviewing historical documents, news articles, and the like, we must be mindful of those with the pen and paper. That is to say, we should take into consideration who is doing the writing, because depending on their position/status in society, history can easily become distorted/one-sided and/or not reported.
In response to Professor Stein's post, the Milgram study was what I first thought about. There are many factors that can contribute to the proliferation of studies such as the Tuskegee and Milgram. It is scary to think a white lab coat or lack thereof, had a large influence on whether or not the participants delivered the shocks to the supposed students in the study. With this in mind, it makes me question the rationale behind the Tuskegee facilitators' participation in the study.
I agree with many of the previous posts wherein guidelines are important to have but useless if not enforced. In my opinion, there should be guidelines to which the international community agrees to adopt. Because as with most things, loopholes may arise and allow for studies such as this to take place. What may be "legal and ethical" in one country may not be in another. Yet, internationally agreed upon guidelines are too useless if a system of accountability is unavailable.
Thank you again for your great class, Professor Simonne!
-Ana
James, I noticed your question remains unanswered. I know that when Simonne first broached the topic with me, this was her great concern as well. I also raised it in my question about conditions that lead to ethical violations particularly with vulnerable populations. My guess is that the students in this class, including yourself, can posit some answers. Why weren't White people in the study? For that matter, why weren't educated African Americans of means in the study? What do you think?
In answer to Professor Stein & James: if you've got nothing, you've got nothing to lose. The experiment relied on the fact that it was providing something to folks who had nothing (of course they did not have nothing, but they did not have health care). While race is of course a factor (and it is amazing how, like gender, it becomes easy to NOT talk about it), in reading the materials I was struck by the poverty of the participants as a determining factor as much as race (though race was what I knew of Tuskegee coming into the topic, so perhaps it was a buried assumption.
Weirdly -- and from a very different place -- we were talking about a similar thing in my LIT 316 class (female detective fiction) today. Nancy Drew, a Depression-era heroine, is kind of a Robin Hood character. She herself is wealthy (her dad is a prominent lawyer) but the folks who she helps with her sleuthing are the rural poor, honest folks who work hard and are still struggling to feed/clothe themselves (or even receive adequate health care -- Nancy often provides nursing aid as she does her detective work!). We discussed why these poor folks, who stand to benefit from her detective discoveries, don't pursue the mysteries themselves (Nancy's work is not rocket science), why they wait to be helped by this middle-class beauty queen. We talked about whether a sense of being entitled to justice is a class thing (a sense of justice is not a class thing, but rather feeling entitled to be a vocal advocate for one's own interest). It is interesting to think about tipping points -- what causes a community to say enough? One of my students pointed out that such advocacy takes time/resources and most folks are just using every minute of every day to get by.
So I still haven't answered James's question!
Simonne, thanks for a great class!
I agree with Apple in that we must look at the powers who make the rules and control institutions. Medical ethics laws were reformed after the Tuskegee experiments, but they did not comfort the African Americans who developed a legitimate mistrust of medical research and of other institutions, such as the legal system. If the oppressed are promised justice from their oppressors through a change of law, it is understandable that they not be trusted.
In regards to James's comment, whites were probably not included in the experiment because their lives were more thought to be more worthy than that of blacks. It would have been much harder for the experimenters to take advantage of the patients if they thought their lives were worthy. It may be a bit of a stretch to call it so, but with any genocidal act, a process of dehumanization must take place first. One characteristic of this is the creation of "the other." In order to dehumanize a group, they must be portrayed as a separate group that is unworthy. This way, committing such horrific acts is much easier. With the African Americans, they were already seen as a lesser group from the slave trade, so committing such unethical acts against them would have been a much easier task than to do it to whites.
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