"The new law-published in the Federal Register one mother earlier-applied to all 'subjects at risk,' meaning 'any individual who may be exposed to the possibility of injury, including physical, psychological, or social injury, as a consequence of participation as a subject.' But what constituted 'injury' and 'risk' was heavily debated. Numerous researchers had appealed to HEW, asking that collection of blood and tissues be exempt from the new law. After all, doctors had been drawing blood for centuries for diagnostic testing, and aside from the pain of the needle stick, there seemed to be no risk. But HEW did not exempt those procedures; in fact, it later clarified the law to specifically include them."
For a few chapters in the book, Skloot makes a point of mentioning the debate on whether or not blood or cells or tissue still belong to the person once they have been removed or left as waste. Several court cases, all with varying circumstances, lead to debates on the morals of scientists & the ethics with which science conducted itself by. Many of these court cases begun to require extensive research on the lawyers case & eventually, with so much new information turning up, interested scientists want to publish a piece on the person behind the HeLa cells. While there had been a publication of her before, many still didn't know Henrietta's real name. At the same time, the HeLa Bomb, set off by Garter, was becoming something that few scientists were trying to fight. In order to fight the HeLa cell contamination, they had to find the specific DNA strand to extract the contamination from other cultures but to do this they would need blood samples from the Lacks family. Meanwhile, Bobbette, Lawrence's wife & Henrietta's son, finds out about the HeLa cell from her friends brother in-law who was working with her cells. 20+ years later scientists still only want to study the Lacks family, only furthering their distrust for the science community & doctors. Honestly, this entire thing is completely disgusting. No Questions. " 'There is a possible danger,' Southman wrote, 'of initiating neoplastic disease by accidental inoculation during laboratory investigation, or by injection with such cells or cell products if they should be used for production or virus vaccine.' "
I can't help but become more & more infuriated as I read this book. It's just so ironic that the very same doctor (Southman) that was afraid working with the HeLa cells so closely would go & inject cancer patients with those very same cells to see if their cancer would get any worse. But they already had cancer so what does it matter right? Not everyone he experimented on had cancer, he eventually injected prisoners without cancer & found their body eventually rejected it anyways & the HeLa cells actually made their immune system stronger. But they were prisoners so they probably deserved it right? What about all the patients he injected with HeLa cells without their consent. Honestly, consent is everything: in science, in relationships, TO SHOW GENERAL RESPECT FOR ANYONE AS A HUMAN BEING & yet... the morals of scientists vary greatly from not only those they experiment on but also the general public. It's no wonder Southman & Mandel (the guy telling his doctors to inject HeLa into patients at his hospital) were rightly prosecuted. Their work was compared to that of the Nazi experiments on Jewish prisoners & the case was compared to the Nuremberg Trails that eventually led to the creation of the Nuremberg Code where the first line reads, "The voluntary consent of the human subject is absolutely essential." But Southman & Mandel weren't the only ones performing unethical experiments. "Night doctors" were what those who lived near Hopkins, the hospital where Henrietta was treated, referred to the doctors that kidnapped black children & adults in the middle of the night to perform experiments on. Reading Henrietta's family discuss this was fascinating: these were real people that were never taken into account until they could be used for the benefit & "progression" of science. Scientists were making millions off of Henrietta's cells & her family couldn't even afford healthcare. Even if they could, their mistrust & hatred for doctors would prevent them from going anyhow. What I find particularly enraging is that this kind of thing still happens today. Not necessarily the "night doctors" but the kind of corruption & deceit that those in power use to manipulate others. It's disgusting. No Questions. "Though no law or code of ethics required doctors to ask permission before taking tissue from a living patient, the law made it very clear that performing an autopsy or removing tissue from the dead without permission was illegal."
I think it's interesting the way Henrietta was treated more like a human after she died than when she was alive. The morals of science, & in society in general really, was so skewed & still is today in some cases, regardless of how much "progress" has been made. Later in the book, a nurse recalls Henrietta's red nail polish being chipped & hadn't thought of her as a human being until then. And nobody thought she was human, it was all about her cells, they thought of her as the polio vaccine or a way to look younger. While the scientific progress made in preventing certain viruses & whatnot was great, her family still had no idea what was happening, they were living there own lives. Scientists didn't care or know that the Lacks children were abused or sexually harassed, the kids didn't even know their mom was dead really. With all the new information to be had, it's surprising how little either science or the Lacks family cared or knew about each other. It's fascinating to see how hyped up vaccines were back then. Remember that time when you got polio? No? That's because people got their kids vaccinated & now, so many kids are more likely to get certain viruses because their parents think it might give them autism which is ridiculous because the science behind that was proved wrong with other science & the scientis that "New tumors seemed to appear daily-on her lymph nodes, hip bones, labia-and she spend most of her days with a fever of 105. Her doctors stopped the radiation treatment and seemed as defeated by the cancer as she was. 'Henrietta is a miserable specimen,' they wrote. 'She groans.' 'She is constantly nauseated and claims she vomits everything she eats.' 'Patient acutely upset...very anxious.' 'As far as I can see we are doing all that can be done.'"
I find this section of the reading to be particularly interesting as they have not only taken cells from her body without her knowledge but refer to her as a "specimen" rather than a human being, perhaps because of the success of her cells' growth but also maybe because of her color & gender. Up to this point in the book, her cells have not only been harvested but also advertised & sold while Henrietta is lying on her death bed with no idea that any of this is happening, her family is even less informed & George Gey is now famous. On top of all this, only a few months before, she says goodbye to her daughter, Elsie, for the last time & nobody would even visit her again. The pain Henrietta went through was just incredible, it was no wonder she knew she was ready to die. Cancer patients today still go through so much pain but I still find it amazing to think of how far we've come from then, most because of Henrietta's cells. I can only imagine the same kind of thing still happens today, the pain patients have to endure. And the system that doesn't allow patients certain treatments until they can pay off what they've already had done? It's outrageous that was even a thing in the 60's. but now? Inexcusable. The only thing I'm left wondering is how Henrietta did it. How did she deal with the pain for so long? What did she think in bed all those months? Why did she keep going? "Like many doctors of his era, TeLinde often used patients from the public ward for research, usually without their knowledge."
I believe this to be the sentence that, essentially, captures the theme of the book. While we already know that Henrietta is going to have cancer & die, this story also questions the morals of science. To experiment on a human being without their knowledge is unethical & wrong but here, in the time period of this book, it seems almost barbaric the way they go about things. The way they treated patients at this time is similar to what I find animals are treated like in testing, While there are those who go about it in a more humanitarian sense, there are others who abuse animals. Not to say that Henrietta was not treated well but there certainly is an unfairness about the situation, this woman helping science years after her death without her family having any knowledge is ridiculous. Not only that, the idea that signing a consent form to have a surgery done seems to be equivalent with agreeing to have ones self experimented on. I don't have any questions about the story that I won't find in the book reading further. |
AboutThis is where I will be keeping my QCCQ's for my honors reading book, The Immortal Life Of Henrietta Lacks. |