The great debate of science, bioethics and public policy converge here.  But don't think that the racism, classism and gender discrimination so evident in Life and Death lose their starring roles.  Take a position.  Blog about it.  Bring in the experts to support your side. Where should the law stand on consent, ownership and property rights?
 


Comments

Katie Chaplin
05/24/2010 16:53

I found it quite interesting that towards the beginning of the "immortality" section, when Hsu asked the Lacks family for their blood samples, not one person could tell them what they were being "tested for". Michael Rogers, the reporter from Rolling Stone magazine told Skloot that "They [the family] truly had no idea what was going on, and they really wanted to understand. But doctors just took blood samples without explaining anything and left the family worrying" (Skloot 192). I personally think that between the scientists using their blood samples to find a human genome for their sibling, Henrietta Lacks, and Hsu, who was in constant contact with the family, someone could have explained to them what had been going on since the day that Henrietta had passed away. In a later interview with Skloot, Hsu told her "I feel very bad. People should have told them. You know, we never thought at the time that they did not understand" (Skloot 189).

As the "immortality" section continues, I find it interesting that these specific cases and situations had been occurring all over the world. People had been suing their doctors who had taken their tissues or samples with no consent, and the Lacks Family had heard nothing about it. For example, the case with John Moore and his doctor David Golde was unique in that when each appealed in court, the judges opinion varied multiple times until finally concluding that "when tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes. When you leave tissues in a doctor's office or a lab, you abandon them as waste, and anyone can take your garbage and sell it" (Skloot 205). However, I think that this topic is and will always be controversial, even in the eyes of a judge because on one hand, the rights of the patient need to be protected, and on the other hand, scientific growth is very important and can be used to save an increasing number of lives. This is shown as the judge told Moore, "a patient must have the ultimate power to control what becomes of his or her tissues," before his final decision on the matter. While all of this controversy and these important decisions were taking place, the Lacks family continue to attempt to spread the story about Henrietta unaware of what was taking place outside of their uneducated lives.

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Mark Chaplin
05/24/2010 17:03

I agree with Noah's previous statements. Henrietta's cells are immortal, but her recognition for all of the things she has done for our society do not amount to the significance of these contributions.

In chapter 24, the doctor had no clue who the HeLa cells came from, except for the last name. He is an example of Henrietta's notoriety in modern times.
"Her cells are known, but she is not." -Noah Friedman
I do not think that Henrietta will be becoming immortal any time soon because, this year there have been approximately 5 articles in major newspapers, such as the New York Times and the Washington Post and other renown papers. If it has not spred by now, it will never spread.

Simply, there is a lack of audience for Henrietta's story.

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Noah Friedman
05/24/2010 17:04

Although Henrietta may, in truth, be alive today through her cells, the whole idea of "immortality" is your recognition by the people who carry your name through time, past your death.

Henrietta is literally helping millions of people with her cells, but most people are not even vaguely aware of this. So, for the time being, Henrietta is not yet immortal. However, the conditions required in order to immortalize her memory are present today.

In order for Henrietta to become "immortal", her story must be spread, which is one of the more noble purposes of this book.

Her cells are immortal, but she is not. She and her family can eventually become immortal, just like Henrietta's cells.

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Dylan Schwartz
05/24/2010 19:20

I'm sorry but I must disagree with Mark and Noah. Yes, it is true that if you want to become immortal your legacy must live on. It is also true that most people have no clue who Henrietta is. That is all about to change, however. Not only was this book published, and then put on Oprah's book club, but, according to Rebecca Skloot's own blog on http://scienceblogs.com/culturedish/, Oprah, Alan Ball, and HBO are going to make a docudrama movie based on the book to tell the story of HeLa and Henrietta. This woman will become known across the world.

On the subject of the Moore v. Regents of the University of California case in 1990, however, I completely agree with the Supreme Court of California when Justice Edward Panelli said that "the court found that Moore had no property rights to his discarded cells or any profits made from them." (Panelli). As the Supreme Court of California stated, just as Moore had no right to profits made by UCLA, the Lacks family have no rights to the profits made by HeLa cells and Johns Hopkins. Even though the doctors took a sample without asking, they originally took a sample for a biopsy (this is your discarded tissue that is up for grabs after removal from the body). In conjunction with these sentiments, I do still feel some empathy for the Lacks family. Since legally what Johns Hopkins did was not wrong, Dr. Lengauer did not need to give the Lacks family a photo of he stained cells, nor did he need to take them to Johns Hopkins to see the live cells (Skloot 261). On a moral standpoint, though, it is extremely kind of the doctor to show this sypmathy. This argument of ethics between moral and legal issues is why the story of Henrietta Lacks, as well as the whole question of bioethics, will remain controversial (even more so as the sophistication of technology increases).

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Karina Leiter
05/24/2010 19:45

Katie, I as well found it quite interesting and almost disturbing how when Hsu took blood samples from the family, they told Deborah and the family that they were doing a cancer test, which doesn't even exist. Deborah had to suffer once more from doctors researching on her family, and in the book is says; "for the next several days, Deboarh called Hopkins again and again, telling the switchboard operators, 'I'm calling for my cancer results.' But none of the operators knew what test she was talking about, or where to send her for help" (Skloot 185). It's ridiculous how doctors and researchers continued on taking advantage of the Lacks family, knowing their lack of higher education. This is a perfect example of the issue of classism. Hsu and McKusick failed to give an accurate and proper explanation of what they were doing to Deborah and her siblings.

Another thing that was what I believe to be a violation of ownership and property rights is how McKusick's book published a picture of Henrietta. "As far as Day knew, no one had even asked permission to publish the picture" (Skloot 189). People were beginning to make money off of Henrietta's personal life as well, and nobody has yet to ask the family's permission for any of it. In Gold's book, "he wrote the details of Deborah's demise: excruciating pain, fever, vomiting; poisons building in her blood" (skloot 210). Reading the details of Henrietta's illness scared Deborah for years causing her to fall apart. Boundaries were definitely crossed when it came to this family.

The law of consent backfired with Deborah when Sir Lord Keenan Cofield, a con artist pretending to be a lawyer, offered to help Deborah sue Hopkins, and "he believed Hopkins was guilty of medical malpractice, and that it was time to sue for the family's cut of all the money Henrietta's cells had earned since the fifties, a percentage of which he would take as his fee" (Skloot 226). When the family denied access, he turned around and filed a lawsuit against Deborah and others involved. The stress was too much for Deborah causing her to nearly have a stroke. The law worked against the Lacks family in many ways, and this was one of the more unexpected ways.

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Andrew Holtz
05/24/2010 19:54

I have to agree with Noah. He brings up a very bold and revealing point. He says that immortality is about how your named is carried out by others and lived on after your death. Henrietta has saved a countless amount of lives and those who have survived because of her do not have a clue or remotely know who she is. Henrietta in my eyes is living, she is just not alive. Her cells have yet to receive the recognition necessary for her contribution today. So, as Noah said, "for now she is not yet immortal." Henrietta's prescence and her story must spread. I think that that is the ultimate goal of why Rebecca Skloot wrote this book, to spread the awareness of such an important figure in Medical History and in all history for that matter. It is almost mind boggleing to think that someone has saved so many lives is not well known or regarded for their achievement. This is because it was who Henrietta was growing up. This miracle did not happen to a fortunate "happy go lucky" person. This happened to a poor women struggling because of a number of racial and ethnic issues that would not allow her to live a proper life. Henrietta and her family had to work hard for every penny they earned. Nothing was given to them. Henrietta cells are immortal but she is not. Nevertheless, Henrietta's cells are her own and those cells would exist without Henrietta Lacks.

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Bharat Chandar
05/24/2010 19:55

I think Cristoph Lengauer's proposal, that we treat valuable cells like oil, should be employed. "When you find oil on somebody's property, it doesn't automatically belong to them, but they do get a portion of the profits"(267).When someone's cells are found to be valuable, the largest chunk of the profits should go to the scientist and the manufacturing company, but a small percentage of the profits should also go to the person who's cells were used. If the cells are taken without informed consent and are then sold commercially, the researcher who removed the cells should be held liable.

In the case of John Moore, he was not awarded any profits becasue the court ruled that he "abandoned" his cells, meaning they were no longer a product of his body, and because Golde "transformed" them into a product of his own ingenuity. However, the judge agreed that there was a lack of informed consent, and that Golde took advantage of his poition as a doctor (205). Moore should have been awarded a portion of the profits. In a way, the incident is similar to pirating movies. It is illegal to make copies of a movie and sell the copies comercially. Similarly, it should be illegal to take cells without consent and sell them commercially.

Another interesting case is that of the Hagahai people of Papua New Guinea. http://www.wipo.int/wipo_magazine/en/2006/05/article_0008.html
I think consent was only necessary from the individual who donated the cells. It was appropriate that consent was not asked for from the Hagahai people or the state. As an individual, the donor should determine what he wants to do with his cells.

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Joshua Paul Robins
05/24/2010 19:57

Once again, I agree with the imfamous Dylan. All Deborah wanted was for her mother to get some recognition. Now her mother's story is part of Oprahs book club and is currently sparking up a major contreversy between bioethics and the law. Soon everyone will know about Henrietta Lacks and her amazing cancer cells that have contributed (and are still contributing) to science today. Soon, the news will use the word "Henrietta" just as much as they use the words "oil spill" and "terrorism."

I am against taking someone's cells and making millions off of them without the person knowing, but I must agree with the Surpreme Court of California. What Golde did to Moore was wrong in the "Who Told You That You can Sell My Spleen" chapter, but Moore should have known there was somthing fishy about the situation. Why would a Dr pay for your flight and for you hotel if he wasn't getting anything in return? I think that patenting cells is a good idea because it can give the original owner of the cells the opportunity to control his cells before his/her Dr does. Unfortunatly, Golde beat Moore to the punch on that one. What Slavin's Dr did was morally rightious of him on page 202. His Dr saw that he was having money problems and told him that what his body was producing was extremely valueable. The law should be set arounds Slavin's Dr's ethics. The patient should make a percent of the profit and the Dr that discovered the problem should make a percentage. This would make both parties happy and would solve a lot of problems between the law and cell distribution.

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Alex Brody
05/24/2010 21:00

I agree with both Katie and Karina. I find it disturbing and absurd that Hsu took blood samples from the family, told Deborah it was for cancer tests, and that no one took the time to inform the questioning Deborah had about her mother’s cells. When Skloot explained to Hsu that the Lackses were upset about scientists using cells without their knowledge she was shocked. “ ‘I feel very bad.’ She said. ‘People should have told them. You know, we never thought at that time they did not understand.’” (Skloot 189) I found this comment quite interesting because I do not understand why, after disagreeing with the scientists, that Hsu still did not inform the Lacks family of what exactly she was doing with the blood samples. Even after Deborah’s extreme concern for what was going on and a thirst for knowledge; there was still no explanation.

I believe that the actions carried out by many of the scientists were inappropriate. Books were published about Henrietta’s family and life without any family members consent or permission, a violation of the law. Gold for example wrote the details of Henrietta’s demise which eventually lead to the demise of Deborah’s. To make that personal information public without consent is unethical as well as against the law. McKusick’s decision to post a picture of Henrietta in his book without permission from the family was wrong as well. In fact, Day had never seen the picture and has no idea how McKusick obtained it. Informed consent should be given out of common courtesy, it should not have to be enforced by a law for it to take place.

However, I would also have to agree with Bharat, seeing that the scientists made the discovery, they should get a majority of the profits made by their research. The family should have made the other portion of the profit just because their cells, in this case Henrietta’s, were used. Also, as Bharat stated, the researcher who removed the cells without informed consent and sold them commercially should be held liable.

http://www.ama-assn.org/ama/pub/physician-resources/legal-topics/patient-physician-relationship-topics/informed-consent.shtml
This site deals with patient physician relationships.

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Neil Mehta
05/24/2010 21:27

Before reading The Immortal Life of Henrietta Lacks, my opinion regarding ownership and property rights was entirely with the scientists. I viewed the scientists as the sole reason that these cells were beneficial and used to save millions of lives. However, having read the first-hand effects on the family, I completely agree with Henrietta when she says, “Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it…I can’t say nuthin bad about science, but I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make” (256). I now believe that the person making the contributing cells and his/her family should receive a small portion of the profit gained from the multi-million dollar corporations. After all, if a person such as Henrietta Lacks had never existed then medical advancements could have been hindered for years longer without immortal cells to be tested on, and these corporations would never exist. The fact that her own family does not even have health insurance seems preposterous, especially since Henrietta’s cells have been used in many vaccines and cure that other people are receiving, when her own family suffers from debt and numerous medical conditions.

I do not believe the decades long cover-up from the Lacks family would have happened in the first place had there been laws requiring consent. Had Day or Henrietta signed a consent form in order to take Henrietta’s cervical cells then this ‘secret’ to the Lacks family may never have been unknown in the first place. Even without required consent, Johns Hopkins did wrong by not informing the family for decades after the miraculous discovery. Part of the reason it took the Lacks family so long to learn about HeLa cells is due to miscommunication and lack of education. When Hsu called for blood samples from the Lacks children, she had assumed that they knew what it was about. The miscommunication occurred when Hsu tried explaining to Day the reason for the blood tests in her broken English, made worse by her Chinese accent. Day thought she was talking about a cancer test, which he would have known did not exist with proper education, but that can be blamed due to the poor treatment and education blacks received in the early 1900s.

With all this said, I believe that consent should always be required and doctors should inform patients if their cells can be used for beneficial purposes including a share of the money made from the cells. I completely agree with Cristoph Lengauer's proposal that is stated in the first sentence of Bharat’s blog.

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Khadijah
05/25/2010 03:37

Racism, classicism, and gender discrimination, aside from the themes of science and ethics, are by far high contributors to our analyzing of this book. It is evident these factors limited the Lacks family then and still can be seen now. On page 60, Alexis Carrel-a French surgeon who grew the immortal chicken heart- wrote a book in 1935 called, Man, The Unknown, “proposing a fixing to what he believed as an “error” in the U.S. Constitution that promised equality for all people. “The feeble-minded and the man of genius should not be equal before the law. The stupid, the unintelligent, those who are dispersed, incapable of attention, of effort, have no right to a higher education.” Careel’s book became an overall best-seller, selling two million copies worldwide and was translated into twenty different languages. His success during this time period implicates, how controversial his book was and widely accepted it was.

Referring to the lower elites who are mainly black people, proposing that they should not be granted equality is a disgrace, ignorant, and disrespectful. Maybe instead of regulating the rights of the non-elites, he could have discussed the issue of education and its little availability to the non-elites.

This is one of the many examples that shows how racism, classism, and gender discrimination were major roles in society at the time-The period of time when Henrietta’s children were growing up.

Here is a link for anyone who would like to skim through Carrel’s book, Man, The Unknown:
http://www.soilandhealth.org/03sov/0303critic/030310carrel/Carrell-toc.htm

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James Callado
05/25/2010 06:11

I have to agree with Dylan completely on this blog because his points are true and accurate. Through this book, Skloot has completely immortalized Henrietta Lacks and the tribulations of her family. This is evident from the book being a top seller to becoming a docudrama on HBO. Just being backed by Oprah and her book club has launched this book into fame and sealed Henrietta’s place in science history.
On the issue where the law should stand on consent, ownership and property rights, I think the ownership of Hela cells are too late to be decided due to numerous reasons. First, at that time, there were no laws or regulations governing the research on cells and who “owned” the rights to the cells. Second, her family took no initiative to make their case public once they discovered what happened to Henrietta’s cells. However, in their defense, they did not have the tools available to them to react such as money, education, and resources. Thus, the lapse of about fifty years and the global distribution of the cells makes this case impossible to judge today with the new laws.
Currently, I feel that law on the consent and ownership of cells is just and fair. It takes into account of the person the cells came from while justly protecting the scientist who are responsible for the numerous advancements in science and medicine. Today, the law requires consent before doctors/scientists take anything from their patients which create responsibility on the part of the patient. This also protects the doctors because with consent, it does not “hinder research by restricting access to the necessary raw materials” and prevents “researchers [from buying] a ticket in a litigation lottery” when they conduct research(Skloot 205).
Honestly, without our cells or volunteers to conduct research on, the medical field wouldn’t be where it is today and we would be dying to common illnesses like in the past. Henrietta’s legacy and contribution to the medical field should be recognized as it is with the publishing of this book. However, they should not receive compensation from John Hopkins because the book provides clear evidence in the Life and Death section that Gey did not sell his discovery. Morally, the big medical and science companies that are still benefitting off Hela cells today should make a donation to the family or the foundation, but legally, they should not have an obligation to make any monetary payment. In the article below from the Baltimore Sun, if doctors and researchers needed consent every time they took something from the a patient’s body, they performed a minor procedure on a patient, or would legally have to compensate the person the source of the discovery came from, the scientific field would halt. In addition, ”the only individuals likely to receive significant compensation would be the rare exceptions like Henrietta Lacks” if laws like this were passed.
http://articles.baltimoresun.com/2010-02-12/news/bal-op.lacks0212_1_cells-henrietta-tissue

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James Callado
05/25/2010 06:16

^My spaces were changed when I posted on the blog. It was more organized and neat on Microsoft Word.

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Ian Gonzalez
05/25/2010 16:58

I agree with Khadijah. There was a problem with society in Henrietta and her children’s day; a problem that has diminished only slightly in the six decades since her death. The socio-racial stratifications which determine a person’s worth from the moment of their conception has been weakened, but by no means killed. The reason behind Henrietta’s and later Deborah’s exploitation lies in their race, which determined their level of education: Deborah had no idea what a cell even was, thanks to the low quality of education for black people while she was growing up. (188-189) The doctors try to explain to her, but they do an inadequate job, and the idea of servitude to authority figures that had been instilled in their slave ancestors’ children and grandchildren prevented them from questioning further. When asked for blood samples to help HeLa research, Day “did what he’d always done when he didn’t understand something a doctor said: he nodded and said yes.” (183)
The cell stealing (as mentioned by many others) is not the major social evil to be fought here. The laws concerning cells and consent back then were inadequate, and they are adequate now, as Skloot explains in detail on page 205. This was due to the legislation of the time not being up to date with the science. But that problem is easily fixed.

The more pressing issue is that of gender and race discrimination which still exists in our world today, even though it was made essentially illegal after the civil rights movement. People who aren’t white males still receive extremely unfair treatment; employment is one of the best examples. In a 2005 poll, 31% of Asian Americans said they had been discriminated against in jobs and 26% of African Americans said the same. (Source: http://www.eeoc.gov/eeoc/newsroom/release/12-8-05.cfm) The most lasting and important thing we can gain from Henrietta’s story is the reexamination of our society, where discrimination and hatred are so commonplace that they were used to justify studies like the Tuskegee Syphilis study and Alexis Carrell’s work.
This is an interesting Youtube video that tackles the issue of one type of discrimination (Muslim) in America…if you want to watch it and comment on it, go to the link below:
http://www.youtube.com/watch?v=8czPXxwbg5U

What would you do in this situation? Hopefully reading about the Lacks family has affected your response to this question in some way. If it has, then Skloot has succeeded and this book is one more step in the right direction on the issue of racism.

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Ian Gonzalez
05/25/2010 17:02

http://www.youtube.com/watch?v=PqbQWxHIn4U&feature=related

Here is another link to a video related to the one I already mentioned; this one has more views, so the conversation in the comments is more lively.

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Jasmin Oliveira
05/25/2010 17:13

In “Immortality”, a great debate of science, bioethics, and the vast controversies relating to the question of where the law should stand on consent, is illustrated as Skloots’ story unravels into a case of justice. As Noah stated, Henrietta’s cells are immortal, but she is not and in order for her to become immortal her legacy must be spread. However, virtually nothing except the celebration of Henrietta Lacks Day, which is celebrated in Turner Station, has been done in order to honor her remarkable contributions to the world. Not even the John Hopkins Hospital has put in effort to help the Lacks family even though it gained immense prestige through Dr. Gey’s initial work with Henrietta’s cells. Although there are very different perspectives towards the issue of who should benefit from these scientific researches, I believe that the family should at least be aided in order to afford health insurance.
Something that struck my attention was the fact of how only 20 year after Henrietta’s death, her actual name, as opposed to the common reference of HeLa cells, appeared in print on an article written by Jones and his colleagues after Gey’s death due to pancreatic cancer (173). Another shocking aspect is when Deborah says, “ "If our mother cells done so much for medicine, how come her family can't afford to see no doctors?" (9). After reading this, I would have to agree with Neil who stated that the person contributing the cells and his/her family should receive a small portion of the profit gained from the multi-million dollar corporations.

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John Tripodo
05/25/2010 19:13

I'm leaning more towards Noah's view on the immortality of Henrietta then Dylan's. After all, how many people outside of America are really exposed to HBO documentaries and follow Oprah's book club.

Personally, I think she will never achieve true household name immortality, but this modern debate might warrant a sentence in the biology and history books of the future. This, like most of these debates, will disappear completely from the mainstream in a matter of months (at most).

I'd also like to bring up the point of, does it matter if she's remembered? Regardless of if she gets a wing named after he or her family gets a cut of the profits. Her cells (whether she's remembered or not) are saving millions of people and assisting many more with treatments.
And in the end, isn't that what counts?

This is where I disagree with Noah, I think it's irrelevant if her story is spread. This is because it won't impact the good her cells are doing for humanity.

This is an informative video about most of the aspects of the issue.

http://www.youtube.com/watch?v=497Scue9sdY

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Eduardo Rangel
05/25/2010 22:06

I believe that John hit many key points when addressing both Noah and Dylan’s remarks about consent issues and the effect that this book will have all over the world. However I disagree with the fact that Henrietta Lacks’ story does not matter because it is a potential story that can be used for future evidence regarding cell property rights. Although, as seen in the Moore v. Regents of the University of California case of 1990, property rights and profits should go to the people who made the scientific discoveries and not the person who gave the cells, I do agree with the fact that morally these issues will seen more in-depth in the future, and the one who gives the cells will get some kind of compensation.

Legally these issues of cell property rights and ownership should be studied further in the future as scientific advancements improve, but until now, I agree with Dylan because it is the scientists who make something using the cells. However this does change when the issues of racism, classicism and gender discrimination enter the table. As Neil already said before, the Lacks were did not know what the doctors from Johns Hopkins were doing to their family because they did not have the privilege of a complete education. These miscommunications between family members and doctors does cause a big problem and when a doctor takes cells without consent or full understanding from the patient, then that doctor should be held liable for his/her actions.

In this online book (Intro section) one can see the implications of cell use in today’s biotechnology, and how sometimes because of legal and moral values, it can be inefficient to use human tissue for experiments:

http://74.6.146.127/search/cache?ei=UTF-8&p=human+cells+ownership&fr=yfp-t-701&u=www.fas.org/ota/reports/8719.pdf&w=human+cells+cell+ownership+ownerships&d=G0b2f-8_U1ir&icp=1&.intl=us&sig=FC.s_KePc5iHg00Hk6LG3g--

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10/04/2010 20:37

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10/05/2010 18:43

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10/14/2010 19:19

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10/19/2010 01:48

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11/29/2010 18:16

Such observations are generally followed by a regretful backward glance at the good old days.

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12/16/2010 17:09

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