First Year Reading Experience Essay Winner

Laua Poss

An Interview with Laura Poss:

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For me, one of the powerful things in the book was how much privacy issues have changed since the 1950s. It is hard not to judge the decision to take Henrietta's cells, but you have to frame it by the standards that they had back then. Doctors were not obsessed with patient consent, as they are now, and lawsuits were not everywhere. Slipping in and nicking off a cell sample for your lab was normal medical practice. The fact that Henrietta even got cancer treatment as a black woman was quite amazing. Still, even though concepts of fairness and privacy have changed, and things are surely better today, there are new areas that cause trouble, so I am glad that my Engineering 100 course spent a week discussing the code of ethics for engineers who are charged with "holding the safety of the public" in their work. Did Henrietta's doctors do that? Were they acting ethically? For that time, and in that context, yes. The book was really enlightening on these important issues.

Ethics have also been part of one of my computer classes, where we read "Little Brother" by Cory Doctorow, which is about Internet privacy and surveillance, and how you are tracked on the Internet more than you know, mostly for advertising purposes. We're now reading "Hamlet's Blackberry," which is about finding the distance between your inner and outer self now that we are always connected with cell phones, computers, and tablets. There is a speed and superficiality that technology brings that affects our other interactions, like we don't want to read a whole book, just a summary. The author argues that it is beneficial to tune into your own internal rhythms, relax and focus on one task at one time instead of listing to music, having Facebook open, searching the web, doing homework, watching T.V. all at once. Learn to do one thing well and carefully requires focus, the way a surgeon has to spend hours perfecting their craft by focusing on one task and making it perfect, because it has to be perfect! That is a great challenge.

I read more out of school when I have more time. I like to read a range of books because there is a lot to learn from fiction and a lot to learn from non-fiction. I particularly enjoy biographies of inspiring people; for example, I was blown away by Laura Hillenbrand's "Unbroken," and found her retelling of Louis Zamperini's life fascinating: his rise to fame, his survival in the Pacific and his experience in the prisoner of war camp. I also like classics like "Wuthering Heights" or "Anna Karenina" (they are classics for a reason). I like to take recommendations from my friends as well. I really hate online reading, and even though there are a ton of free books, I like the feel of pages and holding the text in my hands.

My favorite person in the Henrietta Lacks story was Dr. Gay, who struck me as a very genuine person. If it wasn't for him, the cells would never have been discovered, and wouldn't have been important. Even though he sent them to other researchers, he was also concerned about quality control. He never wanted any harm to the family, and seemed like a good guy, which is hard to find nowadays. He was really passionate about what he did, which was inspiring.


The Evolving Human Rights in the Book and in My Life

winning essay by Laura Poss

Before any mention of the role HeLa cells have played in society or the family from which they stem, Rebecca Skloot begins her story with a quote by Elie Wiesel from The Nazi Doctors and the Nuremberg Code. The quote states how all people should be viewed as valuable, intricate sources of knowledge, and that no human should be regarded in an objective manner. However, this statement does not mention that if one person possesses more valuable information than another, then the information is exclusive to the beholder alone. In fact, the spirit of this quote seems to suggest that were Wiesel to continue speaking, he would say that these characteristics of all people should be shared for the communal benefit of everyone. The particular issue of tissue and information ownership is just one of many that arise in Skloot's story of Henrietta Lacks and her family. HeLa cells may have caused the Lacks family to endure incredible strife and hardship, but the world at large has greatly benefitted from advances in medicine and common medical practices enabled by the cells, many of which are still being refined for the better to this day.

It is difficult to reflect on the issues that arose from the discovery of HeLa cells because of the advancements which have been made since the 1950s with respect to a patient's knowledge and consent and evolving clinical practices. In today's world, taking a sample of cells without consent from a patient, such as in Henrietta's case, is unethical and illegal. What people tend to overlook when hearing Henrietta's story is that it happened 60 years ago, during a time marked by segregation and vague doctoral procedures. Skloot points out how "this was a time when 'benevolent deception' was a common practice - doctors often withheld even the most fundamental information from their patients, sometimes not giving them any diagnosis at all" (Skloot, 63). In retrospect, the fact that Henrietta was able to receive such thorough cancer treatment at any hospital at all is remarkable because of her race. In the words of Deborah Lacks, "If you gonna go into history, you can't do it with a hate attitude. You got to remember, times was different" (Skloot, 176). When people hear about Henrietta and begin to shout "unethical!" because of the extraction of her cells, they must bear in mind that the doctor was only doing was what considered normal, and even ethical, for the time period in which he was living.

As time has progressed and the HeLa debate has grown, despite the many medical and scientific advancements made possible due to these cells, the topics of cell culture and manufacturing, as well as tissue ownership, have remained controversial. In 1990, the Supreme Court ruled that "when tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes" (Skloot, 205). Even though this is the law, patients now often sign consent forms allowing the use of tissues extracted during surgery to be used for research, knowing in advance that this research may be profitable. As Skloot highlights, "The debate over the commercialization of human biological materials always comes back to one fundamental point: like it or not, we live in a market-driven society, and science is part of that market" (Skloot, 325). It is rare, but possible, for valuable tissue to be found during a procedure. This precious tissue, with the right scientific research, has the potential to generate millions of dollars. The problems arise when the patient, who ultimately produced this original tissue, receives none of the profit. However, even though the patient is the creator of the tissue, he or she is not the one who converts the tissue into a valuable product. The doctors and scientists are the ones who perform the tests and create the drugs using the tissue that gives it its value, and they are thus rewarded through the money which the tissue yields. An analogous situation occurred when Steve Jobs implemented Xerox's new graphical interface in Apple's Lisa computer in 1979. In Jobs' case, he admitted to essentially stealing the design, but after adding his own tweaks and improvements, was able to make use of the product in such a way that was very profitable for him. When Xerox sold the pre-Jobs version of the software, it flopped. Just as the tissue that comes from patients is not valuable in itself, its true worth comes from what doctors and scientists can do with it.

Whereas much of Skloot's story is about the benefits and issues that have come about from HeLa cells, the remainder of the story is about the journey that the Lacks family embarks upon to find the truth behind Henrietta and her cells. This journey highlights one of society's most important issues: ignorance and its implications. For a long time, the Lacks family did nothing to learn more about the HeLa cells than what showed up at their front door. The family was not wealthy and had little education. Aside from the newspaper articles that they stumbled upon and the interviewers who came to see them, they did nothing to further their knowledge of what they considered was such an important event. Skloot describes how "Deborah didn't [request a copy of her mother's records from Hopkins] because she was afraid of what she might find and how it might affect her" (Skloot, 209). Unfortunately for the Lacks family, ignorance of this subject harmed them much more than true knowledge of it. Instead of taking the time to learn about what really happened with Henrietta and her cells, the family began to make up their own stories and assumptions about Johns Hopkins, such as saying that the hospital snatched blacks right off the street in order to perform unethical research on them. This ignorance, which created so much strife for the Lacks family, is a much bigger global problem. In places where there is little education and considerable misunderstanding, people formulate their own opinions and assumptions based only on rumors and limited information. This is a widespread problem in the United States where many view Islam as a violent religion due to the terrorist attacks of September 11th. Many people assume that all Muslims are evil based on the activities of a few extremists, even though they have little to no knowledge of Islam. Were the Lacks to have educated themselves on the HeLa issue from the onset, they would have saved themselves significant stress and turmoil.

The many advancements and beneficial drugs that have stemmed from HeLa cells have come from countless hours of research and testing performed by many doctors and scientists all over the world, including my parents. Both of my parents are chemists who use HeLa cells as a means to test the new drugs they create in the laboratory. Skloot states how "the reason Henrietta's cells were so precious was because they allowed scientists to perform experiments that would have been impossible with a human being" (Skloot, 58). Researchers cannot test every stage of a new drug on humans because of the possibility of deleterious results and side effects. However, HeLa cells are a perfect substitute. My family knows just how true the words are when Skloot discusses the advancements in science that have come about due to Henrietta's cells. If Henrietta had been able to foresee the enormous and advantageous effect that her cells have had on the world, effects that have benefitted all of mankind, there is no doubt in my mind that she would have given complete consent to having them removed in the first place.

Bibliography

Devine, Claire. "Tissue Rights and Ownership: Is a Cell Line a Research Tool or a Person?"
The Columbia Science and Technology Law Review, vol. 11 (2009-2010).

Isaacson, Walter. "Steve Jobs." New York: Simon and Schuster, 2011.

Skloot, Rebecca. "The Immortal Life of Henrietta Lacks." New York: Random House, Inc.,
2011.

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