We will discuss Rebecca Skloot’s The Immortal Life of Henrietta Lacks at our meeting on Wednesday, January 15, 2014, at 4:15p.m. in the GAHS library. Please post questions, comments, concerns, criticism, and the like on this blog prior to, during, or after our meeting (before January 24th if you want grade-replacement credit). All questions and responses should indicate an active reading of the text and function to move the conversation forward. (Note: surface-level or obvious questions and responses will not count as participation for grade replacement.)
Those of you unable to attend due to scheduling conflicts may participate in the discussion below by posting a discussion question and offering a detailed response, or by responding to two questions already posted. The note above applies here as well, so heed it!
From the details in the first section of the novel, do you think that Henrietta would want for her family to receive compensation for her cells after her death? Or do you think that she would believe that they were being selfish and undeserving?
Which of the following themes played the biggest role in the book, The Immortal Life of Henrietta Lacks? Explain why.
– Racism
– Morality/Ethics
– The Importance of Family
– Other
I believe that the most important theme in the The Immortal Life of Henrietta Lacks was morality and ethics. I believe this because one of the central issues of this book is the ethical and legal issues raised by the research of HeLa cells. The reporters, as well as some of the doctors, had a serious lack of morals, which greatly changed the story of HeLa cells. Dr. McKusick directed Susan Hsu to contact Henrietta’s children for blood samples to further HeLa research; neither McKusick nor Hsu tried to get informed consent for this research. I do not believe that this request was ethical because it violates The Nuremburg Code of ethics in medical research, which states that researchers must obtain voluntary consent of the patient prior to any research. Additionally, some people believe that Howard Jones violated the ethical principle of patient confidentiality when he supposedly gave Deborah Lacks the medical records from Henrietta, but then denied this action later in the book. In conclusion, this book shows the importance of ethics and morals in our everyday lives.
Besides morality and ethics, I believe one of the biggest themes in the book was the importance of family. The author, Rebecca Skloot, stressed the idea of family unity and sacrifice. We heard about the hardships the Lacks family had to undergo throughout the years and how their lives changed when they learned of the presence of the immortal life of Henrietta’s growing cells. Although we cannot truly understand how they felt, we are offered a glimpse into thoer life and understand the details, including how Deborah developed a severe case of hives and entered depression after learnign new imformation about Henrietta, her mother, and her sister. This book pulls on the heartstrings of the reader when they realize that the sacrifices Henrietta and her family went through led to saved lives that wouldn’t neccesarily have been saved before. What Henrietta’s children had to face at the loss of a parent (among the other hardships they had to endure), I and others don’t have to go through beacause of Henrietta and the role her cells have played over the decades.
How was Skloot different from the other authors that were writing about Hela? Many authors and journalists tried to talk to the family concerning Hela, but recieved little information from the family. Why do you think the family responded well the Rebecca and helped her write the book? Was it because of her outlook on the topic or the motivation she had?
Throughout the book, the major theme was the idea of religion mixing with medicine. The family of Henrietta was very traditional and spiritual, believing that her cells were holy and spawned from God. They did not know that the scientific side of the cells so they had to justify the meaning of the cells with teh only thing reasoning they knew about: religion. It brought up a conflict between medicine and religion: which one developed the most logical understanding of the cells?
What do you think about the idea of “Benevolent Deception” in The Immortal Life of Henrietta Lacks
How did Barack Obama’s presidency and the economy of America during the time of publication greatly affect the audience’s understanding of the characters and issues in The Immortal Life of Henrietta Lacks?
People have been made much more aware of poverty and colored peoples’ hardships rising into success ever since Barack Obama won presidency. The success stories and becoming “something out of nothing” is true for the story of Henrietta and her family. Virtually she led an insignificant life while sehe was alive, but after her death, she is imprinted with immorality as her cells carry on her legacy and have helped millions in health research and solutions. In 2008, the country experienced a significant recession in the economy. With Obama as president and the downfall economy of the U.S., the audience gained a partial insider’s take of the characters and issues they had experienced. Although some people may not understand firsthand what it like to be poor or colored, they have seen in many prominent people and situations, such as an important leader as Obama and an imperative situation as the degrading economy (which effected virtually everyone), similar hardships and trials the Lacks family endured.
Does anyone think that it was a bit ironic that George Gey, who later developed cancer and wanted a cell culture to be taken from the cancer cells in his body so that they might become like Henrietta’s, didn’t actually succeed? Gey, who gave his consent for the cells to be taken, was unable to create the GeGe cell line, while the unsuspecting Henrietta ended becoming one of the most important contributors to science without her consent. What do you think his motives were, too? It’s stated in the book that he wanted the culture to be taken so that he could help advance science, but personally I feel like he also wanted to be known and important throughout the world, like Henrietta was, .
I think you’re exactly right because he was jealous of the fame Henrietta received and wanted a piece of it. Is it very ironic that he too developed cancer but the more interesting part is that his cancer cells did not respond the same way that the HeLa cells did. His motives were simple, he wanted to be as famous and beneficial to science as Henrietta was but the main problem was is that his cells didnt survive like the HeLa ones. He wanted a piece of him to live forever like the HeLa cells are doing and he wanted the fame and the importance in the science community. I think its right to say this is very ironic because it is
In today’s society we view talking a persons cells without permission ethically wrong, but you have to remember this was the 1950’s, so this was not known, nor was a common practice, in 1951 when George Gey first used Henrietta’s cells to grow the cells that became known as HeLa. Without Dr. Gey and his wife, this advancement would have never happened. They tried for 20 years to do this with no success, until they discovered the unique cells from Henrietta. I believe that, while he was trying to make a name for himself was definitely a thought of Dr. Gey, his primary reason for donating his own cells was for further scientific research.
I thought the same thing when I read that part. I feel like usually when discoveries like this are made, the public is more able to connect with the person involved who is more similar to them. In this case, after people learned about who the cells came from, they were all suddenly interested in Henrietta and her family because they were a family and average people and in turn, everyone became less interested in Gey. He was probably frustrated because he felt like he wasn’t being recognized for his discovery how he had hoped. I think he did care about his scientific discovery in terms of how it would benefit the world but he also wanted fame like HeLa so he figured if he could do it once, he could do it again.
His motives were simple: he wished to acquire fame and fortune when he tried to develop the Hela cells. He wanted to have the next immortal chicken heart, to have the next Noble Prize. He wanted ot be recognized as a true scientist that created something that many people have failed in attepting. His motives changed later on. Gey realized that Henrietta was not a thing, but she was a living person with a family and he wanted to use that innovation to help the lives of many people. But, he never considered how it would soon affect teh family
Do you think it was immoral for the repercussions of Henrietta’s cancer treatments to not be verbally explained to her, even though she signed papers of consent? Do you think her race played a role in that occurrence?
I believe anybody would hope that their doctor would tell them what they were about to do to their body, so yes I believe that it was immoral for her doctor not to tell her about the affects of her cancer treatment. People these days would still have trouble understanding what the affects of cancer treatment could do, so in the years when people decided when they wanted to stop going to school, so they weren’t as educated as people are nowadays. I think her race probably was a factor of her doctor not telling her about her treatment, but also I don’t think people back then questioned their doctor, especially black people.
I believe that the doctor’s should have explained that they were taking some of Henrietta’s cells, yes. Signing consent papers technically allowed the doctor’s to take the cells, however, it is part of the medical code of ethics to tell patients the truth and all information relating to their procedure, to the best of the doctor’s knowledge. I also feel that Henrietta’s race was a reason for her lack of information. Doctors of that time felt that they had liberties to black patients that they would not normally have. As a black woman of this time, Henrietta was also not in a place where she could question the doctors. Overall, the doctor’s should have informed Henrietta or at least her family about the sample of cells, regardless of her race.
I do think it was immoral and very conniving as the doctors probably knew she would not fully comprehend the consent papers she was signing because of her African background. but at the same time I think it was an immorality that could have been avoided by the doctors if the just told Henrietta or her family anyway. Henrietta who needed the operation in the first place was in no position to disagree with the doctors, especially since she had no other option as johns Hopkins hospital was one of the very few hospital to actually accept black patients at time.
In the 1950’s doctors had the attitude of paternalism, or “doctor-knows-best.” Doctors operated under the attitude that most patients would benefit from these treatments, and didn’t want to know the specific details, deferring to their doctors ad the experts. I feel that this attitude was definitely held by physicians who treated black patients- at the time, before the Civil Rights Movement of the 1960’s, black patients were not even permitted to be treated in the same hospitals as white patients. In Henrietta’s case she had to travel all the way to Johns Hopkins Hospital in Baltimore, Maryland from her home in Halifax Virginia ( in the southern part of Virginia) in order to seek treatment. When you consider Henrietta’s background and lack of education and her family’s profession as tobacco farmers, it is very likely that her doctor out into consideration that she would be unable to understand the treatments they had planned. To explain the potential repercussions of the treatment would be a long and tedious process, taking more time than her doctor wanted to spend with her, and felt that such an explanation would not change the planned procedure for her treatment. None of these considerations were considered, at the time, to be “unethical” or “immoral,” although these attitudes are no longer acceptable in modern society.
I do feel it was immoral because even though she signed a consent form. she could have gotten confused of what was being asked. Also i do feel that her race played a major role in this occurrence because usually back then, African Americans were “guinea pigs” where most new procedures and experiments were performed on them first to make sure it was okay to use on white people. African Americans were treated horribly and taken advantage of and i believe that Henrietta should have received verbal consent as well as written consent to make sure that she fully understood what was being asked.
Yes, Henrietta deserved to know what the doctors were doing to her body. She definitely deserved to know that the doctors were studying her cells. Had she not been African American, I think the circumstances would have been a little different. At the beginning of the book, it became clear that there was a separate section of the hospital for African Americans. These people were not treated fairly and were used to test new treatments despite any risks. However, she most likely did not bother to ask questions because she was being treated for free and she was one of few African Americans to actually be admitted into a hospital. She probably did not consider asking questions because she thought she was lucky to be treated at the time. Nevertheless, it was still extremely immoral to neglect to inform Henrietta about her treatments and the removal of her cells. Any patient deserves to know what is happening to their body.
It think that it was completely wrong for her treatments not to be explained. Even though she signed the consent papers, she still should have been told about the repercussions. The patient should be told of everything that is happening. it is their body and they deserve to know. I think her race could have played a role in the fact that she was not told what was going to happen. Since African Americans did not receive the same treatment from the public, I think it slipped into the medical field as well.
Do you believe that the Lack family deserves compensation from the sale of HeLa?
I do not know if they DESERVE compensation, however, near the end of the book, I believe that Deborah in particular feels as if it is unnecessary for them to receive this for the HeLa cells. In fact, one of her dying wishes on the last page, was to perhaps be lucky enough to come back and become “immortal” like Henrietta Lacks was, in order to make an impact on the world. While part of me does believe they do deserve compensation, I do not think that they would accept it, Deborah in particular.
I do not think that they deserve compensation from the sale of HeLa; however, they could receive income from various results of HeLa. I do not think that they should get money from the sale of HeLa because for many years, they weren’t even aware that HeLa existed, so why should they receive money for it? Besides being related to Henrietta, the Lacks family really had nothing to do with HeLa. However, the family could receive compensation for things relating to HeLa. For example, if they do an interview relating to Henrietta and HeLa, they should receive compensation, as their time and information is very valuable.
I think in hindsight, yes, they did deserve it. Our society would have not evolved the same without it, and because of that we are in debt to Henrietta Lacks’s life, her struggle, and her donation. (volunteered or not)
On the other side…Her situation could have easily been a measly death in a world of millions. As harsh as that sounds, at the time of her death, nobody knew the capabilities of her cells. So, why did anybody have to treat her any differently? She was a normal black female in the traditional south. Nothing about her stood out, which especially weakened her cause since she lived in a time where racism was still prevalent.
Personally I do believe that the Lack family deserves compensation from He La because it was Henrietta’s cells that made HeLa possible. The family deserves a portions of any profits made from the discoveries made from her cells. But sadly this is not the world we live in, in a perfect world the poor black family would receive compensation from He-La but instead we live in a world where the big corporate companies will get their way just to save a dime.
I believe that they deserve compensation because HeLa came from Henrietta who was a member of their family. But I feel like the only place they deserve compensation from was John Hopkins because that was were her cells were taken without Henrietta’s knowlege, but they didn’t even make a lot of money off of the sale of the HeLa cells because they gave a majority of it out for free.
I definitely think they needed to by recognized for their mother’s cells but I don’t think they need to be paid for her actual cells. The Lacks family didn’t do any of the work involving them. If movies and documentaries and books are created about HeLa cells then the family should get some sort of cut from the earnings, but as Anna said, they don’t really have any reason to receive compensation directly from the production of the HeLa cells.
Although they deserved to know about the sale of Henrietta’s cells right away, I do not think the Lacks’ family should have gotten any compensation for them. Even though they are family, they are not really
“related” to HeLa cells. The family did not have anything to do with the taking or the studying of Henrietta’s cells; they should not receive money for “being related to the person’s cells.”
Besides Zakariyya, what member of the Lacks family was most changed by Rebecca’s generosity and understanding of the Lacks’ situation?
Rebecca’s generosity and understanding also impacted Deborah immensely. Before meeting Rebecca, Deborah could not trust any white reporter and responded to them quite harshly. In the beginning of Rebecca’s journey with her investigation with the Lacks family, Deborah ignored her. After Rebecca’s undeniable persistence in meeting the Lacks family, she finally changed the mind of Deborah and her brothers. After meeting and interacting with Deborah, Rebecca realized the HeLa cells made Deborah a nervous wreck. Rebecca’s patients and care for Deborah soon allowed Deborah to release her tension and except there were people that truly wanted to help the Lacks family. Deborah’s attitude and trust towards whiter reporters soon transitioned incredibly.
I think Deborah was most impacted by Skloot. She turned from a paranoid girl, trying to find more about her mother and her death, to a competent one. No only did Skloot help Deborah find out more about her mother, but she helped her see her mother’s cells, and traveled to the institution where her sister was held, and died. Also, unlike many of the Lack family members, she didn’t completely resent science. This is shown in, “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.” In the end they were the closest in the novel, and Skloot was like a daughter to Deborah.
I think Deborah changed the most throughout the story. Like said prior, she was extremely paranoid towards Rebecca Skloot and her project at the beginning of the novel. As it progressed, she began to develop trust– something she had never done before, especially due to her past with her male relationships. I think one of the greatest turning points for her in the book was when she finally saw her mothers cells and then was able to discover what had occurred with her sister following her mother’s death. Deborah, primarily due to Skloot’s presence in her life, became someone who learned and put into action the idea that somethings just aren’t important and are not worth the time to stress and worry about. She fulfilled the quotation from page 289: “Sometimes we care about stuff too much. We worry when there’s nothing to worry about.”
Who was the one family member from Henrietta’s family (besides Deborah) who was the most memorable to you?
I thought that Zakariyya (I think that is how it was spelled) represented the hidden anxiousness of the whole family. He was clearly angry with the situation, but at the same time was very timid to the idea of discovering the truth about his mother. Deborah may have been the exception to the family in that she was less angry with the situation then her male siblings, but she was still timid as well.
I think the most memorable was Zakariyya (Joe) because he was such a changed man after meeting Rebecca. The way she reacted to him being brash to her showed him that not all reporters/writers are bad and that there are some good people out there. Rebecca just wanted to help him and when he finally realized it he was a completely different individual. His sister Deborah and Rebecca helped Zakariyya come to terms with all the events involving his mother.
I liked Zakarriya, but personally, Elsie Lacks was the most memorable of Henrietta’s family, even though she was barely mentioned throughout the story. The thing that probably made her most memorable in my eyes was that she loved her mother deeply, and when Henrietta died, she didn’t even know. She just kept waiting and waiting for her mother to come to see her until she herself died. Deborah’s reaction to seeing Elsie’s picture was also very memorable to me, and I keep wondering what would have happened had the two met.
The most memorable member of the lacks family was Zakariyya, mostly because of the impact that Rebecca had on him, but he was also very memorable because he seemed to be the most angry with the situation revolving around his deceased mother. I believed that he was rightfully angry not only because of what happened to his mother, but also because of how he had to grow up. Being tossed around from family to family is bad enough for any child, but to be abused by those who are supposed to take care of you is beyond what anybody should have to go through. Even though all of the children were abused by Ethel, Zakariyya received the lion’s share of abuse.
I think that what they did to Henrietta’s family was unfair because while they couldn’t afford health insurrance, Henrietta’s cells were still alive and making millions of dollars. Little vials of her cells were sold in different amounts and varied from different price ranges but none of that percentage went to her family. They weren’t even aware that her cells were still alive and was a medical miracle. Without the HeLa cells, the first two letters of her first and last name which was given to her by George Gey and his wife, some vaccines like the polio one wouldn’t have been created. Her cells have done so much for researchers and although she is dead her family should be entitled to some amount of money. They struggled real hard and their lives would have been much better if they had money. Deborah would have been able to support her kids better when she left her husband. All of Deborah’s brothers and her dad could have benefited with the money especially since some of them had pretty bad medical problems too.
I think it comes down to their morality in turn, religion. You see most of Henrietta’s sons being aggressive with the situation, but then Deborah is more open to the situation and appreciates her mother’s contribution to the world. Henrietta’s sons clearly thought that they should be rewarded for Henrietta’s deeds and therefore show a justified sense of selfishness, but Deborah was excited over the world being rewarded by Henrietta’s deeds, showing a strong sense of morality. We also see this towards the end of the novel when Deborah’s cousin repeatedly refers to Henrietta as an angel who still lives on Earth.
I somewhat disagree with this. I feel that Henrietta’s family had nothing to do with the HeLa cells. They were not their cells, nor did the doctors take cells from the family to try and recreate or enhance the HeLa epidemic. Henrietta’s cells did benefit many people and changed the world of medicine forever, however I believe that had the doctor’s told Henrietta that they were taking her cells, none of the scandal over family compensation would have happened. It almost seems a little blown out of proportion. The Family Compensation Act was not approved until 1996, so it was not unheard of for families to not be reimbursed for deceased family member’s organs or cells. Had the doctors at John Hopkins informed Henrietta and/or her family that they were taking the cells, I feel that there would have been less of a demand for the compensation they are obsessing over receiving.
I completely agree with this statement. Henrietta’s family most definitely should have been reimbursed with at least a portion of the money that was made off of the HeLa cells. Her family was not doing too well financially, and had they had the money, some of the could have receive the medical help they needed and may have lived longer. I think it also would have helped their morale, knowing that Henrietta was still helping them in a way after she passed.
In the beggining of the book, when Alexis Carrel was introduced and his discovery of an immortal chicken heart was explained, why were so many people reluctant to believe him, and become a fan of him when he was a horrible person and a liar?
I believe it was because his discovery overruled his morality. So many people knew nothing about science and the medical field but their relatives were suffering from needing a kidney, heart, or lung transplant, and they so desperately wanted to believe that this was the real discovery, so that this suffering could be prevented in the future. They were so desperate to believe this, that they praised this man, not wanting to believe he was a horrible person.