Exploring Curiosity With A Guideline

A couple weeks ago, in class we had a discussion about the Institutional Review Board (IRB) and its role in research. For a second I was like, where have I heard this acronym before, and then it clicked. Part of my major requirement is to take Psychology 452: Advanced Research Method, a senior seminar, which basically consists of learning how to conduct your own research, with real subjects, data, and analysis. Since we are using students in our research, we had to get our experiment approved by the IRB. The IRB is basically a “constituted group that has been formally designated to review and monitor biomedical research involving human subjects.” The IRB has the authority to approve, require modifications in, or disapprove research. Ultimately, it serves to protect the rights and welfare of the research subjects.

Professional codes of conduct and individual conscience predominately controlled research ethics prior to the twentieth century. Human involvement in scientific experimentation has been frequently raised as an ethical issue, which helped to advance the production of conduct codes and government regulations against unethical behavior. Researchers have considered notions such as informed consent and risk versus benefit, but the codes they have implemented are not yet popularized, and the ones that are have broad definitions of the ethical guidelines.

Therefore, the need for an organization to enforce strict guidelines in order for the research to be considered both ethical and beneficial has been created: the IRB. Unfortunately, even with regulation there have been several cases where humans were mistreated in the name of science. For example, Medical Apartheid by Harriet Washington, explains in great detail of the mistreatment black Americans went through from the era of slavery to the present day. For instance, in the Tuskegee Syphilis Study in 1932, the PHS physicians actively injected the black American subjects with syphilis in order to study the symptoms and in hope to find the cure (pg. 178). Researchers were deliberately harming if not killing black syphilitics in order to test a theory of treatments (pg. 181).

There were many similar cases where black Americans were used in research without consent. Thus, towards the end of the book, Washington gives her opinion on the Institutional Review Board and how she believes it has failed to live up to its position. She states that the IRB “failed to preform their role of protecting the public, and African Americans in particular” (pg. 401). Some of her reasons were that the IRB staff were “inadequately trained,” primarily scientists, and “subject to conflicts of interest” (pg. 401). She insists that each IRB include a medical ethicist and a medical historian, ban any exceptions to informed consent, and for researchers to receive training in ethical and practical conduct in biomedical research.

During class we looked over the FDA webpage and at their most updated Frequently Asked Questions (FAQ) about the IRB. While doing this, I have noticed that there were some facts that made me wonder about how progressive our country really is in regards to this issue. The United States has progressed in so many ways, yet it could be possible that some aspects of our system may keep us from advancing and need to be corrected. For example, the expedited review in FAQ #20 mentioned, “certain kinds of research may be reviewed and approved without convening a meeting of the IRB.” Also that the IRB regulation “permit, but do not require, an IRB to review certain categories of research through an expedited procedure if the research involves no more than minimal risk.” The problem with these statements is that it allows for exceptions. No research project should be an exception to the rules and regulation that serves to protect the rights and welfare of humans. Every research project should go through a routine check with the IRB to make sure there are no risks at all. Another example is FAQ #45, which discusses when it is necessary to mention any changes in the study to the subjects. According to the protocols the subjects will only be informed of the change if “it might relate to the subjects’ willingness to continue their participation of the study.” The problem with this statement is that it allows for the researcher to make the judgment call of whether the subject should be informed or not. The researcher might be biased in not telling the subject at all because it might affect the outcome of their overall study.

Although there were certain aspects of the FAQ that makes us question the most updated IRB intensions, we must remind ourselves that the website is only there to be used as a guidance, not their final constitution or protocol. If we were to see any faults in the information sheet, such as ambiguous statements, all we can do is further our research to better understand and hope that rights and welfare of the people are protected.

In my opinion from where we started as a nation with regards to research for new medical accomplishments, we have progressed in our techniques of approaching and exploring our curiosity. In relation to my own experience with the IRB, in my PSYC 452 class, there are a few qualities that I have noticed that make me feel confident with the IRB. Prior to even being able to conduct the study, my professor had us do a training course online for the National Institute of Health (NIH), since the Geneseo IRB board requires this for all research involving human subjects. The course is designed to provide the minimum level of knowledge that we are supposed to know prior to conducting a study that involves human subjects, in order to understand what is ethically correct in terms of protecting the rights and welfare of subjects in research.

In summary, I believe it is important to increase our knowledge about the human wellness and the best way to do that is through research. A guideline like the IRB prevents researchers from crossing a line that could do more harm than good.

A Controversial Issue

Like others in class, I have also been thinking about the morality of killing the skels and stragglers, human beings who have been completely changed by a horrible and seemingly incurable disease. What bothers me most about them, and the idea of a “zombie” in general, is that they are human beings that need to be killed if anyone not infected wants a chance to live. Read more

My Opinion about Zone One

Before we even started to read Zone One by Colson Whitehead, I had a negatively biased opinion about the book. Personally, I’m not a fan of the zombie apocalyptic genre, so I assumed that I wouldn’t enjoy reading this. All I know about the living dead is that their main goal in “life” is to satisfy their hunger by eating brains or flesh. When I first started to read the book, I honestly hated it and it wasn’t because of the zombies (shocking)! Fortunately like the other books we’ve read in class, I’ve learned to appreciate the literature for the message it was trying to evoke. Read more

The Modern Display of Cadavers

Our reading of Fortune’s Bones by Marilyn Nelson, as well as our ensuing class discussion, raised important questions regarding the morality of using the bodies of non-consenting humans as anatomical models for the purposes of medical academia. As we know, Marilyn Nelson used a series of poems to describe the story of Fortune, whose slave owner used his corpse for anatomical research, and whose bones have been displayed publically for over 200 years. As we discussed in class, the United States has a dark history of using the bodies of former slaves for the purposes of dissection for medical research. It wasn’t until recently that I began to consider our modern-day system for obtaining human bodies for these purposes.

A 2006 NPR article written by Neda Ulaby discusses a traveling exhibition called Body Worlds, which exhibits dissected bodies that have been preserved through plastination, a process invented by Gunther von Hagens, a German anatomist. (Ulaby, 2006) According to the FAQ on the exhibition’s website, (Link) the bodies being displayed have all been donated by consenting organ donors. However, Neda Ulaby’s article provided evidence for the contrary. According to her, U.S. customs officers seized over 200 brain samples and 56 bodies being sent to Gunther von Hagens’ laboratory from the Novosibirsk Medical Academy in 2001. The remains were traced back to a medical examiner based in Russia, who had previously been convicted of illegally selling the remains of prisoners and the homeless. Von Hagens never received criminal charges, and maintains that the bodies were legally obtained.

While Body Worlds still claims to only use the corpses of consenting donors, the same cannot be said for their competitor, BODIES: The Exhibition. Ulaby’s article states that Roy Glover, the spokesman for the exhibition, has publicly stated that it receives its bodies from China from unwilling prisoners. In fact, a public disclaimer on its website states that the exhibition “relies solely on the representations of its Chinese partners and cannot independently verify that they do not belong to persons executed while incarcerated in Chinese prisons”, with respect to their dissected bodies, organs, and fetuses. (Link)

I found myself shocked when I first read of this, as these exhibits still display bodies across the U.S. today and have been highly regarded by medical professionals and academics as an incredibly useful teaching tool, according to Ulaby. As a current anatomy student, I certainly understand the value of using cadavers and dissected models as a resource for students to understand the underlying parts of the body. While this is true, I cannot imagine myself feeling comfortable inspecting the corpses of non-consenting donors, who may or may not have been executed in Chinese prisons as a political dissident, as Ulaby asserts that human-rights groups based in China have claimed that this is a possibility.

It was the two exhibits that caused me to reflect upon our prior reading of Fortunes Bones. In Nelson’s first poem of the story, Dinah’s Lament, Fortune’s wife was portrayed as having been forced to broom and clean around her husband’s remains. (Nelson, 2004)  As I read about modern traveling exhibitions of dissected bodies with questionable origins, it has reminded me of Nelson’s description of Fortune in the preface, as a man who was stripped of his flesh as well as his name and story. In the context of the theme of our class, this story acted as a reflection of the inhumane acts that occurred over 200 years ago. Just as Fortune’s name and story had been stripped away from him by his owner, these modern exhibitions still display bodies of non-consenting persons, without any publicly available records or documentation regarding the body’s origins. Until these records are available, I believe these present-day exhibits are raising serious moral questions, which strongly parallel those raised in Fortune’s Bones. Does any person have the right to mutilate and display the body of someone who hasn’t consented? Before reading of these exhibits, I believed the common consensus amongst the U.S. population would be a “no” to this question.

Defining Vocabulary or a Deeper Understanding

After Wednesday’s class activity, I couldn’t help but wonder why Professor McCoy had the class share the definition of words we didn’t know. Although you should look up words you don’t know the definition to, I doubt that Professor McCoy’s exercise was to teach us that. I believe that the purpose of the exercise was to indirectly discuss different elements of Zone One by Colson Whitehead without directly addressing specific parts of the novel. Read more

Colson Whitehead: Brilliant Writer

I have been thinking about the language Colson Whitehead uses in Zone One ever since I began reading it. It’s complex. Overly-descriptive. Lyrical. Eloquent. Frustrating. Muddy. Inflated. But I love it.

I didn’t think it would be worth writing a blog post about, but Wednesday’s class made me change my mind. By the end of class time, there were about forty plus previously unfamiliar words written on the board. And I’m sure we could have come up with plenty of more. Zone One is a complex novel through and through.

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