My favorite part of the entire novel was the "Immortality" section. I thought it was very interesting how Cristoph Linengauer (the scientist who allowed Deborah to see her mother's cells) was seemingly the only scientist in the novel to show compassion, and even guilt, towards Henrietta's children for all of the suffering they had been through. I also found it almost disturbing to read about what Rebecca and Deborah found out about Elsie and her stint at the state hospital. Much research has been done on "negro institutes," with little information showing up about any of the residents/patients before 1950 due to an asbestos issue. I was happy to read that Deborah found all of the answers she needed before her death in the early 2000s, with Rebecca's help, given that she spent her whole life wondering who her mother was and why her cells were so important to the scientific field. I was also happy to read that Zakariyya came around and "softened up" upon seeing his mother's cells. Another section I found interesting was when Rebecca was sifting through her mother's medical records. Deborah found this time to be difficult, which I found strange since she'd become so close to her during this process. This suspiciousness only confirmed the psychological effects that HeLa had on Deborah; the physical ones were made obvious (hives, high blood pressure, etc). I think a quote at the very end of the book summarized the novel itself very well: "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,"
-Chapter 33, “The Hospital for the Negro Insane,” discusses the death of the Elsie Lacks in the state hospital and asylum for Negroes, Crownsville. The care at Crownsville is described as “one doctor to every 225 patients,” “death rate far higher than its discharge rate,” and “being locked in poorly ventilated cell blocks with drains on the floors instead of toilets.” While at Crownsville to investigate the death of Elsie, Deborah is described as saying, “Like he told us, they didn’t have the money to take care of black people (Skloot, 275).” To what degree do you think the care Elsie received would have differed from a Caucasian of the same situation? Do you think that race played a significant role in the situation surrounding Henrietta’s cells?
-In the last chapter Deborah states, “But maybe I’ll come back as some HeLa cells like my mother, that way we can do good together out there in the world.” She paused and nodded again. “I think I’d like that.” (Skloot, 310) In chapter 25 the writer states that “The Lack’s brothers continued to tell anyone who’d listen that Johns Hopkins had stolen their mother’s cells and owed that millions of dollars.” These two statements outline the argument over the use of cells. Should cells be donated by the patient at the benefit of medical science and improved treatments; or should cells be a commodity which are assigned a value and traded?
-Chapter 25, “Who Told You You Could Sell My Spleen?” discusses the legality of ownership of patient cells. This chapter describes the patient, John Moore, who was diagnosed with a rare and deadly cancer of the spleen. The doctor removed the spleen, but in the process took cells from the spleen which were later reproduced and sold as cultures. Moore took the doctor to court claiming that the patient cells were property of the patient, and the doctor was not entitled to financial gain as a result. The case was tried several times, with a final decision in favor of doctors and researchers being: “when tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes (Skloot, 205).” Do you agree with this ruling? Should a consent be required for collection of cells? Why or why not?
-“Once there is a cure for cancer, it’s definitely largely because of your mother’s cells (Skloot, 267).” The cells collected from Henrietta Lacks undoubtedly play a significant role in many of the medical advances of the last century. Aside from the medical advances, the consideration of the ethicality surrounding the collection of cells has also spurred a development in the field of medical ethics. In what ways has the case of Henrietta Lacks encouraged an increase in consideration of ethics in the biomedical and research field?
It was definitely apparent in the last section of this book that Henrietta's family was uninformed and pretty much clueless during the process of getting Henrietta known for HeLa. A few text citations include:
- "Lawrence called the main switchboard at Hopkins, saying, 'I'm calling about my mother, Henrietta Lacks--you got some of her alive in there.' When the operator couldn't find a record of a patient named Henrietta Lacks in the hospital, Lawrence hung up and didn't know who else to call." (Skloot, 181) - quote from Michael Rogers, a reporter for "Rolling Stone": "'They 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)
It wasn't until Skloot patiently sat down with Deborah for endless hours that Deborah and her family had resources to learn about Henrietta's immortality. Although Skloot didn't personally teach them everything they needed to know, she gave them the means to retrieve the information, including introducing Deborah to the internet and setting up meetings with multiple doctors and medical professionals. It wasn't that Henrietta's family didn't necessarily want to learn, but there was such a curve from their lack of education that learning the truth was intimidating.
On a more scientific note, it was great to actually learn why the HeLa line was immortal. "This explained the mechanics of HeLa's immortality: telomerase constantly rewound the ticking clock at the end of Henrietta's chromosomes so they never grew old and never died" (Skloot 217). Freshman year, I took a class in biotechnology and its applications, and we spent some time talking about telomerase. It was nice to be able to connect something that on another tangent with a portion of this book. Additionally, I really appreciated Skloot's ability to tie the scientific mystery/findings in with the events and family experiences; it contributed a deep and holistic perspective.
Lastly, I think it's extremely important to note the impact Henrietta's cells and the issues surrounding the cells had on Henrietta's family. When letters and legal documents flooded Deborah and Speed's homes, "Speed stopped opening the letters and let them pile up in the backroom of her store until they stacked thirty envolopes high Then she started a new pile. She prayed to God for the letters to stop..." (Skloot 229). Also, the stress from the experience led Deborah almost to death (Skloot 300). The final example is a quote from Zakariyya: "'Maybe her cells have done good for some people, but I woulda rather had my mother. If she hadn't been sacrificed, I mighta growed up to be a lot better person than I am now" (Skloot 248). For Zakariyya, much of the entire situation (Henrietta's death and cell debacle) negatively impacted his life. This proves that it wasn't just Henrietta and her cells, but it was so much more.
To comment on Evans question about To what degree do you think the care Elsie received would have differed from a Caucasian of the same situation? I think that the care would of differed significantly. At this point the African American race was still seen as not equal to the white race. The black people did not receive the same standard of care that whites did. Although, the mentally ill were also seen as less of a human, mental disease was treated differently than it is now. But I definitely think that being a black woman she did not receive the same treatment as a white person. Like Evan said the standard was on doctor to 225 people. So even if the doctor did treat the mentally ill and black as equal to white patients there is no way he could give them the care they needed.
I will also comment on some of Evan's questions. I agree with Gina. Race definitely played a huge role throughout the whole novel which was obvious as we read about the separate sections for "blacks" and "whites". The care was definitely not equal. Cells should definitely be donated by the patient to benefit the medical field. I think that most people would be willing to donate. Having something taken from them would make people angry, but when given the choice, I bet quite a few would choose to donate them. I do not agree 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).” I believe that consent should definitely be required for collection of cells because they are coming from the person's body. Just as you can choose to be an organ donor, you should also be able to choose whether or not you consent to the collection of cells. Some people have different religious views (as learned when discussing death and dying) in which they believe that you need your entire body together when you die so that you will have it in the afterlife. I am not sure if any are that extreme as to where they would be opposed to removing cells (it is not exactly the same as the heart), but still people would disagree. I think that they have the right to decide. I believe that the case of Henrietta Lacks encouraged an increase in consideration of ethics in the biomedical and research field because it created awareness. As discussed in the blog about genetic engineering, there comes a point when we must ask what is pushing the boundaries too far ethically.
As for Evan's question of would the care differ if Elsie was causation, I would have to agree with Emily and Gina in that elsie's care would have been radially different. There were specific hospitals for the black's and white and that like the wards that emily said speaks volumes as to the difference in care. I do think that people should donate to the medical field whether it be cells in this specific case or organs or even bodies. All of these things help to advance the medical field allowing another person to live a little bit longer. However i do not think they should have taken the cells with out asking or even telling her that they were taking them. I also agree with emily that i dont agree that you should have no right to your cells taken with or without your conceit. I do agree that there is a very fine line between ethically right and pushing to far as emily mentioned. I think that although in the end the taking of cells helped the medical community in such a huge way it was pushing the boundaries to far and thus peoples rights are violated. It should not matter black white or purple we all have to take into consideration what it to far. what if someone had done it to you ect.
I definitely believe that Elsie's race played a major role on the care that she received. Unfortunately, during that time blacks did not receive the same care or respect that white people did. Nothing during this time was an equal right for both blacks and whites, including the care that they received. This was a time where the white man was still trying to prove that they were there stronger and better race, which put black people at a major disadvantage especially when it came to their care. I believe just as people make their own decision to donate their organs or their body, they should also make the decision to donate cells. Their cells are still a part of their body, so they have the right to refuse to share that. Just look at the effect the HeLa cells had on that entire family. It is ethically important that people freely offer themselves in order to help with medical discoveries. I think that there absolutely should be informed consent when collecting someones cells. That person has the right to know exactly what it going to happen, just as if they were having surgery. The purpose of autonomy is to be able to make a decision on your own, but in order to do that you have to be fully informed and understand what it is you are agreeing to.
I was honestly ethically torn throughout the entire novel. The fact that the use of the HeLa cells benefitted so many people and helped to discover treatments for a vast number of diseases and disorders almost makes the fact that there was never consent worth it. However, on the same note, if it were my mother and her cells were used for research, and my family was never informed, I would be furious. Consent is such an important aspect to care in the medical field. The point that Megan previously made about deciding to donate organs is also very relevant. If we decide whether or not to donate our organs when we die, why was there no say so on Henrietta Lacks's part when she was still alive concerning her cells?
Like Brittany, I was ethically torn throughout the novel. However, I even though the HeLa led to medical breakthroughs that saved the lives of many others, I don't think the doctors were morally justified in taking Henrietta's cells without her knowledge. Henrietta Lacks was not the only person from which the doctors took cell samples, and there's no way the doctors could've known if their efforts would ever lead to finding a way to grow cells, or how big of an impact it would have on the medical field once they did. I think some of the profits from HeLa should've gone to Henrietta's family, or at least some sort of repayment for the emotional turmoil that her family went through for so many years. It's also very clear in this last section of the book that the death of Henrietta had profoundly negative effect on the Lacks family. It seems as though the more they learned about the HeLa cells, the less they really understood. How little effort it would've taken for someone to sit down with the Lacks family and explain what the cells were and why they were important. It really bothers me that Deborah had to live thinking her mother felt the pain of so many experiments and diseases, all because no one cared enough to explain to her the truth. I'm very glad Rebecca spent so much time researching Henrietta Lacks and explaining the magnitude of her sacrifice and the immortality of her cells on a level the Lackses could understand. It was also good to learn that the Lacks family seemed to be on a road of improvement, and that Henrietta's story became well-known to the world, even before Deborah's death.
Should cells be donated by the patient at the benefit of medical science and improved treatments; or should cells be a commodity which are assigned a value and traded?
This is a very loaded question that Evan asked. I was completely torn throughout the book. However, I have come to a conclusion. Cells should be donated by the patient, not used as a commodity. When we make cells a commodity, we are taking away the value of human life and the ownership of the living being over their own body. Consent is a key part of medicine that the doctors and researchers should stick to. Kant would have been completely outraged by the dishonesty shown in this novel and true situation. The sly techniques used by the researchers took away from telling the whole truth in the situation. Human beings should choose what is done to their bodies while alive and after death.
To comment on Chelsea's comment, I also found it very interesting that Cristoph Linengauer, one of the scientist, was the ONLY one who felt any compassion towards the children. I never realized how so many scientist live with what seems to be simply "scientific feeling" they seem to of lost any human emotions of sympathy or compassion. Also, in chapter 25, I found the spleen issue very interesting. I never really thought about how easy it can be for doctors to "steal" cells from patients everyday, especially in surgery. The thought that our cells can be easily stolen is a scary thought. And then to hear that the doctors won the case of the patient shocked me. They claimed that as soon as doctors take cells for research we lose any claim over our own cells. This leads me to ask, Are we just being used as research tools?
My favorite part of the entire novel was the "Immortality" section. I thought it was very interesting how Cristoph Linengauer (the scientist who allowed Deborah to see her mother's cells) was seemingly the only scientist in the novel to show compassion, and even guilt, towards Henrietta's children for all of the suffering they had been through. I also found it almost disturbing to read about what Rebecca and Deborah found out about Elsie and her stint at the state hospital. Much research has been done on "negro institutes," with little information showing up about any of the residents/patients before 1950 due to an asbestos issue. I was happy to read that Deborah found all of the answers she needed before her death in the early 2000s, with Rebecca's help, given that she spent her whole life wondering who her mother was and why her cells were so important to the scientific field. I was also happy to read that Zakariyya came around and "softened up" upon seeing his mother's cells. Another section I found interesting was when Rebecca was sifting through her mother's medical records. Deborah found this time to be difficult, which I found strange since she'd become so close to her during this process. This suspiciousness only confirmed the psychological effects that HeLa had on Deborah; the physical ones were made obvious (hives, high blood pressure, etc). I think a quote at the very end of the book summarized the novel itself very well: "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,"
ReplyDelete-Chapter 33, “The Hospital for the Negro Insane,” discusses the death of the Elsie Lacks in the state hospital and asylum for Negroes, Crownsville. The care at Crownsville is described as “one doctor to every 225 patients,” “death rate far higher than its discharge rate,” and “being locked in poorly ventilated cell blocks with drains on the floors instead of toilets.” While at Crownsville to investigate the death of Elsie, Deborah is described as saying, “Like he told us, they didn’t have the money to take care of black people (Skloot, 275).” To what degree do you think the care Elsie received would have differed from a Caucasian of the same situation? Do you think that race played a significant role in the situation surrounding Henrietta’s cells?
ReplyDelete-In the last chapter Deborah states, “But maybe I’ll come back as some HeLa cells like my mother, that way we can do good together out there in the world.” She paused and nodded again. “I think I’d like that.” (Skloot, 310) In chapter 25 the writer states that “The Lack’s brothers continued to tell anyone who’d listen that Johns Hopkins had stolen their mother’s cells and owed that millions of dollars.” These two statements outline the argument over the use of cells. Should cells be donated by the patient at the benefit of medical science and improved treatments; or should cells be a commodity which are assigned a value and traded?
-Chapter 25, “Who Told You You Could Sell My Spleen?” discusses the legality of ownership of patient cells. This chapter describes the patient, John Moore, who was diagnosed with a rare and deadly cancer of the spleen. The doctor removed the spleen, but in the process took cells from the spleen which were later reproduced and sold as cultures. Moore took the doctor to court claiming that the patient cells were property of the patient, and the doctor was not entitled to financial gain as a result. The case was tried several times, with a final decision in favor of doctors and researchers being: “when tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes (Skloot, 205).” Do you agree with this ruling? Should a consent be required for collection of cells? Why or why not?
-“Once there is a cure for cancer, it’s definitely largely because of your mother’s cells (Skloot, 267).” The cells collected from Henrietta Lacks undoubtedly play a significant role in many of the medical advances of the last century. Aside from the medical advances, the consideration of the ethicality surrounding the collection of cells has also spurred a development in the field of medical ethics. In what ways has the case of Henrietta Lacks encouraged an increase in consideration of ethics in the biomedical and research field?
It was definitely apparent in the last section of this book that Henrietta's family was uninformed and pretty much clueless during the process of getting Henrietta known for HeLa. A few text citations include:
ReplyDelete- "Lawrence called the main switchboard at Hopkins, saying, 'I'm calling about my mother, Henrietta Lacks--you got some of her alive in there.' When the operator couldn't find a record of a patient named Henrietta Lacks in the hospital, Lawrence hung up and didn't know who else to call." (Skloot, 181)
- quote from Michael Rogers, a reporter for "Rolling Stone": "'They 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)
It wasn't until Skloot patiently sat down with Deborah for endless hours that Deborah and her family had resources to learn about Henrietta's immortality. Although Skloot didn't personally teach them everything they needed to know, she gave them the means to retrieve the information, including introducing Deborah to the internet and setting up meetings with multiple doctors and medical professionals. It wasn't that Henrietta's family didn't necessarily want to learn, but there was such a curve from their lack of education that learning the truth was intimidating.
On a more scientific note, it was great to actually learn why the HeLa line was immortal. "This explained the mechanics of HeLa's immortality: telomerase constantly rewound the ticking clock at the end of Henrietta's chromosomes so they never grew old and never died" (Skloot 217). Freshman year, I took a class in biotechnology and its applications, and we spent some time talking about telomerase. It was nice to be able to connect something that on another tangent with a portion of this book. Additionally, I really appreciated Skloot's ability to tie the scientific mystery/findings in with the events and family experiences; it contributed a deep and holistic perspective.
Lastly, I think it's extremely important to note the impact Henrietta's cells and the issues surrounding the cells had on Henrietta's family. When letters and legal documents flooded Deborah and Speed's homes, "Speed stopped opening the letters and let them pile up in the backroom of her store until they stacked thirty envolopes high Then she started a new pile. She prayed to God for the letters to stop..." (Skloot 229). Also, the stress from the experience led Deborah almost to death (Skloot 300). The final example is a quote from Zakariyya: "'Maybe her cells have done good for some people, but I woulda rather had my mother. If she hadn't been sacrificed, I mighta growed up to be a lot better person than I am now" (Skloot 248). For Zakariyya, much of the entire situation (Henrietta's death and cell debacle) negatively impacted his life. This proves that it wasn't just Henrietta and her cells, but it was so much more.
To comment on Evans question about To what degree do you think the care Elsie received would have differed from a Caucasian of the same situation? I think that the care would of differed significantly. At this point the African American race was still seen as not equal to the white race. The black people did not receive the same standard of care that whites did. Although, the mentally ill were also seen as less of a human, mental disease was treated differently than it is now. But I definitely think that being a black woman she did not receive the same treatment as a white person. Like Evan said the standard was on doctor to 225 people. So even if the doctor did treat the mentally ill and black as equal to white patients there is no way he could give them the care they needed.
ReplyDeleteI will also comment on some of Evan's questions. I agree with Gina. Race definitely played a huge role throughout the whole novel which was obvious as we read about the separate sections for "blacks" and "whites". The care was definitely not equal. Cells should definitely be donated by the patient to benefit the medical field. I think that most people would be willing to donate. Having something taken from them would make people angry, but when given the choice, I bet quite a few would choose to donate them. I do not agree 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).” I believe that consent should definitely be required for collection of cells because they are coming from the person's body. Just as you can choose to be an organ donor, you should also be able to choose whether or not you consent to the collection of cells. Some people have different religious views (as learned when discussing death and dying) in which they believe that you need your entire body together when you die so that you will have it in the afterlife. I am not sure if any are that extreme as to where they would be opposed to removing cells (it is not exactly the same as the heart), but still people would disagree. I think that they have the right to decide. I believe that the case of Henrietta Lacks encouraged an increase in consideration of ethics in the biomedical and research field because it created awareness. As discussed in the blog about genetic engineering, there comes a point when we must ask what is pushing the boundaries too far ethically.
ReplyDeleteAs for Evan's question of would the care differ if Elsie was causation, I would have to agree with Emily and Gina in that elsie's care would have been radially different. There were specific hospitals for the black's and white and that like the wards that emily said speaks volumes as to the difference in care. I do think that people should donate to the medical field whether it be cells in this specific case or organs or even bodies. All of these things help to advance the medical field allowing another person to live a little bit longer. However i do not think they should have taken the cells with out asking or even telling her that they were taking them. I also agree with emily that i dont agree that you should have no right to your cells taken with or without your conceit. I do agree that there is a very fine line between ethically right and pushing to far as emily mentioned. I think that although in the end the taking of cells helped the medical community in such a huge way it was pushing the boundaries to far and thus peoples rights are violated. It should not matter black white or purple we all have to take into consideration what it to far. what if someone had done it to you ect.
ReplyDeleteI definitely believe that Elsie's race played a major role on the care that she received. Unfortunately, during that time blacks did not receive the same care or respect that white people did. Nothing during this time was an equal right for both blacks and whites, including the care that they received. This was a time where the white man was still trying to prove that they were there stronger and better race, which put black people at a major disadvantage especially when it came to their care.
ReplyDeleteI believe just as people make their own decision to donate their organs or their body, they should also make the decision to donate cells. Their cells are still a part of their body, so they have the right to refuse to share that. Just look at the effect the HeLa cells had on that entire family. It is ethically important that people freely offer themselves in order to help with medical discoveries.
I think that there absolutely should be informed consent when collecting someones cells. That person has the right to know exactly what it going to happen, just as if they were having surgery. The purpose of autonomy is to be able to make a decision on your own, but in order to do that you have to be fully informed and understand what it is you are agreeing to.
I was honestly ethically torn throughout the entire novel. The fact that the use of the HeLa cells benefitted so many people and helped to discover treatments for a vast number of diseases and disorders almost makes the fact that there was never consent worth it. However, on the same note, if it were my mother and her cells were used for research, and my family was never informed, I would be furious. Consent is such an important aspect to care in the medical field. The point that Megan previously made about deciding to donate organs is also very relevant. If we decide whether or not to donate our organs when we die, why was there no say so on Henrietta Lacks's part when she was still alive concerning her cells?
ReplyDeleteLike Brittany, I was ethically torn throughout the novel. However, I even though the HeLa led to medical breakthroughs that saved the lives of many others, I don't think the doctors were morally justified in taking Henrietta's cells without her knowledge. Henrietta Lacks was not the only person from which the doctors took cell samples, and there's no way the doctors could've known if their efforts would ever lead to finding a way to grow cells, or how big of an impact it would have on the medical field once they did. I think some of the profits from HeLa should've gone to Henrietta's family, or at least some sort of repayment for the emotional turmoil that her family went through for so many years.
ReplyDeleteIt's also very clear in this last section of the book that the death of Henrietta had profoundly negative effect on the Lacks family. It seems as though the more they learned about the HeLa cells, the less they really understood. How little effort it would've taken for someone to sit down with the Lacks family and explain what the cells were and why they were important. It really bothers me that Deborah had to live thinking her mother felt the pain of so many experiments and diseases, all because no one cared enough to explain to her the truth. I'm very glad Rebecca spent so much time researching Henrietta Lacks and explaining the magnitude of her sacrifice and the immortality of her cells on a level the Lackses could understand. It was also good to learn that the Lacks family seemed to be on a road of improvement, and that Henrietta's story became well-known to the world, even before Deborah's death.
Should cells be donated by the patient at the benefit of medical science and improved treatments; or should cells be a commodity which are assigned a value and traded?
ReplyDeleteThis is a very loaded question that Evan asked. I was completely torn throughout the book. However, I have come to a conclusion. Cells should be donated by the patient, not used as a commodity. When we make cells a commodity, we are taking away the value of human life and the ownership of the living being over their own body. Consent is a key part of medicine that the doctors and researchers should stick to. Kant would have been completely outraged by the dishonesty shown in this novel and true situation. The sly techniques used by the researchers took away from telling the whole truth in the situation. Human beings should choose what is done to their bodies while alive and after death.
To comment on Chelsea's comment, I also found it very interesting that Cristoph Linengauer, one of the scientist, was the ONLY one who felt any compassion towards the children. I never realized how so many scientist live with what seems to be simply "scientific feeling" they seem to of lost any human emotions of sympathy or compassion.
ReplyDeleteAlso, in chapter 25, I found the spleen issue very interesting. I never really thought about how easy it can be for doctors to "steal" cells from patients everyday, especially in surgery. The thought that our cells can be easily stolen is a scary thought. And then to hear that the doctors won the case of the patient shocked me. They claimed that as soon as doctors take cells for research we lose any claim over our own cells. This leads me to ask, Are we just being used as research tools?