The Immortal Life of Henrietta Lacks
A Life Of Suffering in The Immortal Life Of Henrietta Lacks
Imagine if your mother died and her cells were stolen, as well as you and your siblings growing up in an abusive environment. That is the story of Henrietta Lacks and her family. She was a black woman, who had cervical cancer growing in her cervix. During her surgery to remove the cancer, they took a sample of a tumor in her cervix to have it examined in the lab. While scientists were working with Henrietta’s cells, they found out that they were immortal. At this point no one, including Henrietta, knew that the sample was even taken. Life continued for Henrietta and her family, but because of all the dramatic events that occured, the family continued to suffer throughout their lives. Elsie, the oldest daughter, was sent to Crownsville, hospital for the insane, for having Epilepsy. Deborah, also known as Dale, and the rest of her siblings, were forced to live with her abusive aunt and uncle. She spent most of her life trying to get answers about her mother’s cells. Her experiences were shown throughout the book, The Immortal Life of Henrietta Lacks by Rebecca Skloot, which also conveyed the idea of how many different ways the Lacks family suffered throughout the years. In the movie, Henrietta’s life was shown in short, vague flashbacks to showcase parts of her life to give viewers a better perspective of what she went through. The book portrayed her life by describing Henrietta as if it were present time.
Suffering can be shown in many different ways throughout the book and movie. A way they were both the same was when Ethel would abuse the Lacks kids. Ethel is related to Henrietta because she is Henrietta’s brother Galen’s wife. Ethel and Galen forced themselves into the Lacks family’s house, after Henrietta died. Deborah told us that “Sometimes she would beat Joe for no reason while he lay in bed or sat at the dinner table. She’d hit him with her fists, or whatever she had close: shoes, chairs, sticks. She made him stand in a dark basement corner on one foot, nose pressed to the wall, dirt filling his eyes.” (Skloot 112). After the death of their mother, the Lacks kids were affected in ways no one could ever predict was coming. When Ethel moved in with the Lacks, she took all of her anger out on the kids. Since no one knew the kids were being abused, Joe received most of the abuse. No one was able to be there to protect the kids, leading to a lifetime of anger, violence, and homelessness as a result of Ethel’s abuse. Although Ethel’s abuse wasn’t the only thing that the Lacks kids suffered from.
The book showed suffering in a few different ways than the movie did. While Henrietta was getting radium treatments, she would walk from her cousins house to the hospital but once her sickness got worse, she stayed at the hospital and the doctors wouldn’t give her the full treatment. Rebecca told us “Her doctors tried in vain to ease her suffering. “Demerol does not seem to touch the pain,” one wrote, so he tried morphine. “This doesn’t help too much either.” He gave her Dromoran. “This stuff works,” he wrote. “But not for long.”” (Skloot 66). These notes from her physician reflect not just Henrietta’s level of pain, but also their desperation for something to work. Morphine is a very strong pain killer, and that didn’t even come close to helping Henritta’s pain. Later we find out from her autopsy, that Henrietta pain was caused by the invading tumors all over her body, which was causing the excruciating amounts of pain she had. Henrietta suffered from pain along with the family not getting any of the money.
The Lacks family suffered in ways that people never understood. Zakariyya explained ““Them doctors say her cells is so important and did all this and that to help people. But it didn’t do no good for her, and it don’t do no good for us. If me and my sister need something, we can’t even go see a doctor cause we can’t afford it. Only people that can get any good from my mother cells is the people that got money, and whoever sellin them cell”” (Skloot 246-47). Zakariyya (a.k.a. Joe) sums up the Lacks family’s anger about HeLa cells, about how the wealthy white people use their mothers cells for fame and profit to help other wealthy people, while the lacks are struggling to afford basic necessities. The family not getting any money, along with Elsie and her siblings getting abused was just the beginning of their suffering.
Suffering is a state of going through pain which Elsie Lacks, the oldest of the Lack kids, went though at Crownsville. Rebecca described the picture of Elsie, they found at Crownsville, “Her once-beautiful eyes bulge from her head, slightly bruised and almost swollen shut. She stares somewhere just below the camera, crying, her face misshapen and barely recognizable, her nostrils inflamed and ringed with mucus (…) She appears to be screaming. Her head is twisted unnaturally to the left, chin raised and held in place by a large pair of white hands.” (Skloot 273). The picture of Elsie Lacks at Crownsville, showed that not only did she suffer at the hands of the doctors, and scientists, but she was tested on since she had epilepsy. All together, the information about Elsie destroyed Deborah’s peace of mind. After seeing the picture of Elsie, Deborah got sick of thinking about the things that happened to Elsie. Deborah kept thinking about how she couldn’t do anything to help her. Suffering is shown many times throughout the book, from Henrietta’s treatment, to the family not getting any of the money, from Elsie in Crownsville.
Suffering was shown in different ways from the movie to the book. In the movie, Deborah and Rebecca went to go look at Crownsville to look for Elsie’s medical report. They found a worker who showed them her records. The worker found a picture and showed it to Deborah and Rebecca. According to the movie, ““I have never seen a picture in one of these reports before, it’s… Let me see. Let me see. Why they holding her neck like that? They shouldn’t be holding her neck like that. What are they doing here?”” During this time, many patients’ records were not kept or even had their picture with them. It was very rare to have the picture of the patient, and once Deborah saw it, it made her sick, seeing how Elsie was treated.
The one person in this story, who suffered the most out of everyone was Deborah Lacks. She told Rebecca things different from the book, “They took me to every doctor and psychiatrist, and, you name it, they said I had it. Paranoia, schizophrenia, anxiety.” Deborah suffered from mental and physical health, which she didn’t find out until she was older in life.
The Immortal Life of Henrietta Lacks movie and book have many similarities and differences. HeLa cells changed the medical field drastically, and not just because of them being special. Many people don’t know the story behind HeLa cells and how much the family had to suffer for it. The Lacks family suffered immensely through their lifetime and showed that perseverance will get anyone through the mud in which they are stuck in.
Overstepping Boundaries in Frankenstein And Immortal Life Of Henrietta Lacks
The responsibility people have when they are developing new technology is to not overstep boundaries. In both Frankenstein and The Immortal life of Henrietta Lacks tie down with ethics. One can see how science seems to trample human rights. Both Victor in Frankenstein and Scientists in the story of Henrietta Lacks overstep the boundaries of nature by setting to prolong the human life which Victor does by creating life and Scientists by creating immortal cells and playing god. Showing why a creator should understand their place and not go past boundaries and rules to create something.
Frankenstein is not the first story to use scientific experimentation as its method. It presents a framework for narratively examining the morality and ethics of the experiment and experimenter. Science is an exploration of new frontiers, to discover and test new ideas.Which Victor does but he goes a bit too far. He proceeds to break the laws of nature and create life. Which even further puts the blame upon him is where he runs away from the monster to never check where it had gone simply releasing it upon the world. Victors lack of consideration of both the monster and the world he has let the monster loose upon are two examples of him being irresponsible with his technology and making him responsible for his creation.
Scientists were using Henrietta Lacks cells but her family was not aware of it. Lacks cells were making some people such as the pharmaceutical companies rich such as cell banks and biotech companies. Not only did it help gain much profit in the selling of her cells but also progress in the forms of vaccines. All this happening and the creators gave no financial support to the woman’s family or information on what was happening. The creators had plenty of opportunities to fix their wrongs but didn’t for example tinge the family had found out what had been happening they have no approval for this and the Scientists researching this continued to develop her cells into other things. Showing them clearly cross a moral boundary.” ‘…right after she died they called me in the office wanting to get my permission to take a sample of some kind.I decided not to let them’ Jet said the family was angry- angry that Henrietta’s cells were being sold for twenty five dollars a vial,” (Skloot 28) This quote shows how the Creators are clearly responsible for their creation because they had plenty of opportunities to stop and no permission to continue but did anyways. Giving them no excuse for the exploitation of Henrietta’s cells.
Frankenstein and the Immortal Life of Henrietta Lacks are taking a step further in science. Both texts tie down with ethics. One can see how science seems to trample over human rights. “All I remember is that she had this disease, and right after she died… wanting to get my permission to take a sample of some kind, I decided to not let them.” (Skloot 28) The Immortal Life of Henrietta Lacks, revealed the ethical dilemmas interlaced with HeLa cells and medical research more broadly which were concerns of consent, privacy and compensation, among others. In Frankenstein Victor conducts a gruesome experiment in secrecy without letting others know, and with no consideration of the possible consequences. Frankenstein creates the monster simply because he can. This turns out to be a mistake for him since his creation goes on a vengeful murder spree over the course of the next few years.Victor wanted to create something never done before, he was overstepping the boundaries of god. Which is like the scientists when they took henrietta’s cells, then created cells that were eternal.
The responsibility people have when they are developing new technology is to not overstep boundaries. In both Frankenstein and The Immortal life of Henrietta Lacks it’s easy to see how these texts tie down to ethics. The texts exemplify crossing boundaries like the scientists in The Immortal Life of Henrietta Lacks when they trampled over her rights yet achieved medical advances. In Frankenstein he prolonged human life by creating the creature. These Show why a creator should understand their place and not go past boundaries and rules to create something.
The Immortal Life Of Henrietta Lacks: The Inequality In Healthcare
Would it be fair to you and your family if someone benefited from your own cells without anyone in your family knowing? This is one of the problems Henrietta Lacks and her family had to deal with in the novel The Immortal Life of Henrietta lacks. Henrietta Lacks was a poor black farmer who was diagnosed with cervical cancer. Her pains and tumors caused her to visit John Hopkins Hospital for radiation treatments. Here, doctors took samples of her tissues, one from the tumor and another from the healthy tissue nearby without her consent. These ended up becoming a major factor in scientific discovery in the medical/medicinal field. These discoveries include finding cures for polio, smallpox and other major diseases. Throughout the book, we see how racism/equality, the use of self-profiting, and trustfulness go a long way in the eyes of Henrietta. During Henrietta’s time, equality was not handed out to everyone, especially to those of color. Since Henrietta trusted in the doctors, who worked on her, for they knew what they were doing, her trust for them backfired when the doctors, more specifically Dr. George Grey, withdrew her cells without her consent or her freaking knowledge. This eventually evolved into the doctor’s own profit in the medical fields since Henrietta’s cells were functioning. During the 1950s and 1960s, equality for colored people was nonexistent, especially towards health and medical care. The majority of hospitals only ministered to white people and only a certain amount of hospitals treated black people. John Hopkins Hospital was the only hospital in Henrietta’s area to treat the colored. At Johns Hopkins, blacks were treated with all the equipment needed to fulfill their medical needs; however,it was not treated as sufficient as the whites. Even though blacks were given treatment, it was far worse than that of whites due to their race and lack of money to pay for the treatments. In this hospital, “several studies have shown that black patients were treated and hospitalized at later stages of their illness than white patients, they received fewer pain medications, and as a result, they had a higher mortality rate” (64). This was exemplified in how the doctors treated Henrietta and her family.
Science is based on cold, hard facts, and the attitude the scientific community developed is on par with just that mentality. These doctors figured that since the Lacks were a poor, black farming family who did not make as much as a typical white family, they could take advantage and do things without the family’s consent, such as taking samples of Henrieta’s cells without them knowing, even though Henrietta signed a form that stated: “I hereby give consent to the staff of the John Hopkins Hospital to perform any operative procedures” (31). Also due to Henrietta trusting the doctors in whatever they did to “help” her, these doctors exploited her by doing what they felt would be self-beneficial towards themselves. These doctors kept Henrietta unaware of the HeLa cells so they could make profits off of it by distributing it to medical centers everywhere. This was not only done by the family’s lack of knowing, but also by Dr.Gey and his drive towards medical success. Doing this not only went to prove that Dr.Gey was a “genesis” in discovering this, but it also showed how one could sink so low as to take away one’s tissue without them knowing.
The Immortal Life Of Henrietta Lacks And Her Role In Biomedicine
The Immortal Life of Henrietta Lacks by Rebecca Skloot is an in-depth look at the life of Henrietta Lacks and the benefits and pitfalls of using her cell’s in biomedical research. The book, a work of nonfiction, also delves into the lives of Henrietta’s relatives and children. It explores the importance of medical consent regarding research on individuals’ tissues and cells and looks the impact medical research can have on a family. There are many themes in the book that particularly impacted me especially as I embark on a new career as a nurse.
One of the scenes that impacted me the most from the book is when Deborah, Henrietta’s daughter is spiraling through all of the things that have been done to her mother’s cells. On page 196, there is a passage that starts off with,” The more Deborah struggled to understand her mother’s cells, the more HeLa research terrified her. When she saw a Newsweek, article called PEOPLE-PLANTS that said scientists had crossed Henrietta Lack’s cells with tobacco cells, Deborah thought they’d created a human-plant monster that was half her mother, half tobacco. When she found out scientists had been using HeLa cells to study viruses like AIDS and Ebola, Deborah imagined her mother eternally suffering the symptoms of each disease: bone-crushing pain, bleeding eyes, suffocation. And she was horrified by reports of a “psychic healer: who, while conducting research into whether spiritual healing could cure cancer, attempted to kill HeLa cells by a laying on of hands.”
The passage and many other parts of the book go on to detail how every little thing that was on the news about her mother’s cells truly scared Deborah because she didn’t understand that it wasn’t actually her mother that was being shot to the moon, put in a nuclear bomb or being tested with deadly diseases and that is was simply a part of her body that was left behind and her mother could not actually feel all those things being done to her cells. The fact that the scientists and physicians that had worked with the HeLa cells had not explained the situation to Henrietta’s family or educated them on the type of research being conducted led to lifetime of worry and anxiety for many members of Henrietta’s family.
This theme of the book really changed my view of people in general because I often assume that everyone knows the same things that I know based on what is in the news or popular in culture. I think many providers assume that the patient has a general understanding of whatever is being told to them. When, in fact, the majority of the US population read at an 8th grade reading level (Eltorai et al. 2014).
The book helped me understand that many people, like Henrietta and her family, grow up in stressed situations without access to a proper education. In the United States, we have a wide gap in the education level of citizens with some being very highly educated and some never having gone past the 8th grade. With these discrepancies, it is important the informed consent documents and explanations are created to provide a deep level of understanding to every patient regardless of their education level. Without universally comprehensible consent documents, researchers are just perpetuating the pattern of taking advantage of uneducated people in society.
The book impacted my future as a provider by ensuring that I take the time to explain pertinent information in a slow and understandable way with each patient. There are many methods including the teach-back method that I could also use to ensure that my patients understand what I am telling them. This point is highlighted in the book when Dr. Lengauer finally took the time to show Henrietta’s family the HeLa cells. By taking the time to show the family the HeLa cells and describe how they had been used in research, Dr. Lengaer provided Henrietta’s family with long overdue peace. If that explanation had happened at the very beginning, then the family could have lived a more stress-free life and known that their mother was at rest and was not actively involved in the ongoing research of her cells. One of my main goals in my practice will be to avoid any misunderstandings with diagnosis, medicines and patient education by taking the time to ensure that explanations are understood by all.
Ethics Of Human Research And Informed Consent In Immortal Life Of Henrietta Lacks
Informed Consent is patient authorization which is given to a specialist for treatment with full knowledge of the potential dangers and advantages. In The Immortal Life of Henrietta Lacks, Rebecca Skloot addresses the treatment offered at Johns Hopkins in the 1950’s and Tuskegee. The Tuskegee syphilis study and uninformed consent became prevalent issues in the medical community which resulted in laws and regulations formulated to address these issues. These laws and regulations have been passed on for generations and will continue to do so because of the unethical disasters of uninformed consent which was caused by Johns Hopkins, the Tuskegee Syphilis study, and the accident involving Henrietta Lacks getting her immortal cells stolen from her. The Tuskegee syphilis study was one of the most important cases that determined the future for informed consent.
The Tuskegee syphilis case was a serious topic in the 1930’s. Poor, uneducated black men were being used for research when they thought they were getting treatment. There were medications for syphilis accessible when the investigation started, yet it was chosen to retain even those from members without their insight and graph the course of untreated syphilis in these African American men. The medication was penicillin, which was a known treatment for syphilis at the time, yet the men were supplied with placebos instead of medicine that would actually cure them because doctors wanted to continue their research without these men knowing. According to the Tuskegee Syphilis study by Donna Batten, “It (The Tuskegee Syphilis study) resulted in new laws requiring informed consent for medical experiments on humans” (Batten 1⁄3). The Tuskegee Syphilis study affected many lives because the doctors were so focused on medical research rather than saving lives. The guidelines that were made were under the direction of the National Commision for the Protection of Human Subjects of Biomedical and Behavioral research. They were “… in charge of identifying the basic ethical principles that should underlie the conduct of biomedical and research involving human subjects and to develop guidelines that should be followed to assure that such research is conducted in accordance with those principles” (Mandal. Et all 2/4). These guidelines were created against these unethical practices because the study resulted in many men being permanently affected or even dying because the doctors used them as a research project rather than increasing their chances of getting well. Another example of how informed consent was forever changed in relation to Johns Hopkins Hospital.
Johns Hopkins is known for the many medical advances and achievements they have made in research over the years. Johns Hopkins is trusted by many, yet some people believe Johns Hopkins has wronged them by using uninformed consent for research. The doctors and people who work at Johns Hopkins claim they have done nothing wrong, that they were just fueling research for the good of science; their website makes them seem credible and trustworthy. According to Johns Hopkins website,’The current oversight system, requiring informed consent for most clinical research, grew out of a scandal-ridden period in which people were used in research and exposed to significant risk without their knowledge or consent…'(Johns Hopkins University/Hub 2014). They claim that since there was no regulation on cell research and informed consent in the 1950’s, that they did nothing wrong. And yes, it is true that there was no regulation on cell research but in the 1980’s, new laws and regulations called common rule was created; it went as follows: “requirements for ensuring compliance by research institutions and requirements for researchers obtaining and documenting informed consent” (Mandal. Et all 3⁄4).This relates back to informed consent because Johns Hopkins did not get consent for the many research projects they have conducted, especially when it comes to African-American’s. Many indignious, poor, African Americans believed the tales and stories of Johns Hopkins kidnapping blacks and using them as test subjects. Many say these tales are true. This was a fear commonly spread throughout the surrounding cities because of the past Johns Hopkins has had in which they have ignored informed consent for research purposes. Johns Hopkins also plays a major role in the case of Henrietta Lacks.
The Immortal Life of Henrietta Lacks portrays the genuine story of Henrietta Lacks and what she faced as she was the minority and she had special cells. Rebecca Skloot not only mentions the challenges Henrietta faced, but how Johns Hopkins and Tuskegee played a role in them as well. She touches on the subject this in Chapter six, when Skloot references the oral presentation she gave in her history class. She addresses uninformed consent, the fact that they were all poor uneducated black men, and that doctors and nurses watched them die slow, painful deaths (Skloot 50). This is not the only instance Skloot alludes to the topic of uninformed consent; she mostly talks about it in regards to Johns Hopkins, and Henrietta‘s case. Henrietta lacks had her cell tissue stolen from her and John’s Hopkins hospital from her cancer biopsy. She was completely unaware of the immortal cell chain her body contained and had no idea the doctors were researching her and testing her cells constantly. They grew so much that her cells were named HeLa and even sold around the world. In the prologue, Skloot is interviewing Deborah, when Deborah says “All I remember is that she had this disease, and right after she died they called me in the office wanting to get permission to take a sample of some kind. I decided not to let them” (Skloot 4). This relates back to informed consent because the doctors not only did not get consent from Henrietta or her family, but they turned around and used her cells for their own benefit and profit.
Tuskegee, Johns Hopkins, and The Immortal Life of Henrietta Lacks have many things in common, but the main topic is uninformed consent. Tuskegee has the syphilis case in which doctors did research on African American men who had syphilis and did nothing to help them, and Johns Hopkins has taken cells for research on many occasions, and The Immortal Life of Henrietta Lacks because Henrietta’s cells were taken from Henrietta with no consent and built into a business that makes money off buying and selling HeLa. Even though we may have never had the amazing advancements that we have today in medicine because of HeLa, the doctors simply did not ask. In The Immortal Life of Henrietta Lacks, Rebecca Skloot address is the treatment offered at Johns Hopkins in Tuskegee. The Syphilis study and uninformed consent became prevalent issues in the medical community which resulted in laws and regulations formulated to address these issues.
Description of Ethical issues on collection of Henrietta cells without her knowledge Essay
The Immortal Life of Henrietta Lacks, which forms part of Rebecca Skloot’s works, is a detailed description of science. It talks about racial politics that are related to medicine and health interventions. It gives a highlight of Lacks family’s difficult experiences by explaining the story of Henrietta Lacks about the immortal cells called HeLa in the book (Nutting, 2010, Para. 1).
In addition, the book inter-relates ethical issues about medicinal research and science writings. As a further description of the concern of the book, this short paper describes ethical issues relating to collection of Henrietta cells by a doctor without her knowledge or consent.
More often, science provides a record of facts. However, Skloot’s book goes further than this to give bold, deep, and glorious and yet brave revelations. Margonelli (2010) posits, “Skloot confronts the spookiness of the cells themselves, intrepidly crossing into the spiritual plane on which the family has come to understand their mother’s continued presence in the world” (p.17).
From one view, it is clear that Lacks gave no permission for doctors to collect and tissue culture her cells. When Skloot called Baltimore in search of Lacks’ widower, the immediate recipient of her call yelled, “Get Pop, lady’s on the phone about his wife’s cells” (Skloot, 2010, p.52).
Skloot was later to learn that any call that arrived at the widower’s house was merely an inquiry call about Lacks’ cells. Despite Henrietta’s cells becoming essential for the development of medicinal research on cervix cancer, ethical issues arise since her family feels cheated by John Hopkins. The family they claim that the facility has made much profit out of Lacks’ cells.
Skloot’s work in a big way looks into the emotional and ethical issues relating to the collection of Lacks’ cells without her approval. This places questions about the relationship between the law and ethics in relation to tissue culture. The ability of the Media to influence such relationships is also questioned. In this end, Skloot (2010) explains, “inadvertently careless journalists and researchers violated the family’s privacy by publishing everything from Henrietta’s medical records to the family’s genetic information” (p.118).
However, even though one can treat this as Skloot’s opinion, the scientific researches attract big ethical debates. Deporah, Henrietta’s daughter perhaps well exemplifies these concerns when she claims, “Truth be told, I cannot get mad at science,…But I will not lie, I would like some health insurance so I do not get to pay all that money every month for drugs my mother cells probably helped make” (Skloot, 2010, p.198).
Additionally, Deborah experiences lifelong struggles trying to understand both the existence of her mother’s cells and science, which facilitated their existence. This shows that she undergoes some emotional turmoil attributed to medical research discoveries such as tissue culture (Nutting, 2010, Para. 2).
Conclusively, The Immortal Life of Henrietta Lacks is more than the expression of Henrietta’s family struggles with emotional and ethical concerns of science. It also questions the ability of science to neglect messy and careless human ability to provide materials used in scientific research.
Nevertheless, on the other side, scientists will argue that Henrietta cells are not supposed to be related to Henrietta, the person from whom they were obtained. To scientists, this would make science easier to do. Perhaps this also justifies why the doctor took cells out of Henrietta without her permission to do tissue culture on them.
Margonelli, L. (2010). Eternal life. The network times book review, 1(1), 16-17.
Nutting, L. (2010). The immortal life of Henrietta Lacks: review. Retrieved from <https://www.goodreads.com/book/show/6493208-the-immortal-life-of-henrietta-lacks>.
Skloot, R. (2010). The immortal life of Henrietta Lacks. Broadway, Manhattan: Crown Press.
“The Immortal Life of Henrietta Lacks” by R.Skloot Essay
The story of Henrietta Lacks highlights the importance of ethical principles in scientific research. Moreover, it shows that modern scholars have to pay much more attention to the rights of an individual. It should be noted that the cells of this woman were used to develop an immortal cell line, and it was important for many subsequent studies (Skloot, 2011).
Moreover, she did not give an informed consent to this procedure. This paper is aimed at discussing various questions that are related to this case. Overall, it is possible to argue that the rights of a person should be the top priority for scientists, and the interests of subjects or patients should be considered first. This is one of the main arguments that can be made.
First of all, there are several reasons why the researchers did not ask Henrietta’s permission. At that time, the activities of scientists were not closely regulated, and many ethical aspects of their work were disregarded. For example, one should mention that such a concept as informed consent emerged only in 1957, and it was six years after the death of Henrietta (Skloot, 2011, p. 132).
This is one of the aspects that can be identified. Secondly, Henrietta Lacks was a member of the African-American community, and this population was not sufficiently empowered at least in terms of civic rights. Therefore, the researchers did not expect to face any legal challenges.
So, one has to speak about such factors as the legal environment of that period and racial discrimination. This is one of the reasons why scientists did not ask Henrietta for her permission. In their opinion, it was not even necessary.
In turn, the relatives of Henrietta also did not know anything about the use of her cells for various studies and experiements. It should be noted that these people could demand for financial compensation, and these demands could pose some difficulties for governmental organizations and private companies that might use HeLa cells for pharmaceutical studies (Brodwin, 2000, p. 68).
This issue is particularly important if one takes into account that these cells were instrumental for a great number of studies. To a great extent, the relatives of Henrietta Lacks could be regarded as the heirs who could ask for a certain share of the profit.
Again, it is possible to argue that the socio-economic status of African-American community can explain the actions of those people who used HeLa cells. They did not believe that the relatives of Henrietta Lacks could uphold their rights in the court. This is one of the main issues that should be considered.
In my opinion, it is unethical to take the cells of Henrietta Lacks and derive profit from their use without asking for this woman for her permission. In this context, the term ethical can be interpreted as something that complies with the rules established within a particular group or community (Rogelberg, 2008, p. 34). There are some of the norms that have been established in some community.
In particular, an individual has an unalienable right to his/her body, and any use of it should be based on the informed agreement of the person (Rogelberg, 2008, p. 34). More importantly, an individual is entitled to financial compensation provided that his/her property is used for commercial purposes (Rogelberg, 2008, p. 34).
It should be taken into consideration that HeLa cells were important for the development of many drugs such as polio vaccine (Brodwin, 2000, p. 68). Therefore, I think that the descendents of Henrietta should receive compensation. The main question is how the amount of this compensation can be determined.
It seems that this reimbursement should be a certain percentage of profits that were derived from the research involving the cell of Henrietta. This reimbursement should be provided by both governmental and private organizations that relied on this genetic material. It seems that such an approach to this ethical dilemma can be quite justified.
The unfolding of this story produced a profound effect on the lives of her husband and children. For example, her daughter Deborah began to think about the danger of cancer and the idea that her own children could live their mother (Skloot, 2011, p. 135). This is the thought that he desperately tried to avoid.
One can argue that this sensation can be damaging for a person. On the whole, they were more affected by the disturbing memories of Henrietta Lacks. To a great extent, these events produced a disturbing effect on these people. This is one the main aspects that cannot be identified.
This example suggests that in many cases, people do not have complete control over their bodies. Still, I would not object if my tissues had been used for some biological research, especially if in this way, they can find a cure for some disease or virus. Nevertheless, I would insist that a scientist or physician asks for my consent because it means that he/she respects my civic rights.
As it has been said before, the interests of a patient or research participant should the first priority for the scientists, even if they are on the verge of making a breakthrough discovery. At this point, I cannot tell whether I will necessarily demand for my compensation because I understand that I will not be contributing significantly to this study, its design, or analysis of data. So, it is not likely that I will insist on any significant reimbursement.
It is possible to draw parallels between these case Henrietta Lacks and the problem of abortion. In each of these situations, one can speak about such a concept as a person’s right to his/her body. One of the questions that are often debated is the extent to which a person has control over his/her body. However, there are several important differences. In particular, when speaking about abortion, one should remember about the fetus.
The main question that should be considered is whether this creature can be viewed as a human being. In contrast, Henrietta Lacks had full control over her body. This is one of the main differences that should be considered by legislators and researchers since these people are responsible for maintaining the rights of patients and subjects.
On the whole, these examples suggest that scientific inquiry involves ethical choices that people have to make. The case of Henrietta Lacks shows that in the middle of the twentieth century, the rights of individuals were not properly upheld by the state. Moreover, the needs of her family were disregarded. This problem was particularly aggravated by racial discrimination.
Brodwin, P. (2000). Biotechnology and culture: bodies, anxieties, ethics. Blooomington: Indiana University Press.
Rogelberg, S. (2008). Handbook of Research Methods in Industrial and Organizational Psychology. Boston: John Wiley & Sons.
Skloot, R. (2011). The Immortal Life of Henrietta Lacks. New York: Broadway.
Faith vs. Ethics in Skloot’s “The Immortal Life of Henrietta Lacks” Essay (Book Review)
The non-fiction book called The Immortal Life of Henrietta Lacks reveals a story of Henrietta Lacks, an African American woman whose cancer cells were removed right after her death from cervix cancer. The book reveals contradictory issues related to medical ethics, science, and legal aspects. The author of the book, Rebecca Skloot, presents the life of a real-life woman, as well as the influence of poverty, race, and science on medical research. In addition, Skloot clearly describes the science and traces racial underpinnings of medical politics.
The writer also highlights the story of HeLa cells development, as well as the role of an African American woman in medical and scientific discoveries, including cloning, polio vaccine, and vitro fertilization. Overall, The Immortal Life of Henrietta Lacks is a story of a sophisticated confrontation between ethics, medicine, and ethics, as well as a collision between faith healing and discovery. Thus, HeLa cells of Henrietta Lacks were considered the most significant contribution to science and microbiology. The woman, however, was not related to medicine and science. In February 1951, Mrs Lacks was diagnosed with cervical cancer and she died some months later.
Before discussing aspects of scientific discovery and healthcare improvement, ethical concerns of the case should be addressed as well. Painful experiences of scientific research represented in the book introduce the exploration of the history of ethics within a context of scientific research in the United States. Moreover, the non-fiction story is dedicated to exploring people’s perceptions and prejudices with regard to scientists, science, and the research community.
In this respect, Skloot brilliantly illustrates the account of the Lacks family – both past and present – is strongly connected with dark history of scientific experimentation on African American people, as well as to the emergence of bioethics and legal constraints. In the first part of the book called Life, the author traces the Lacks family’s emotional suffering, including the changing ethical and legal patterns related to the collection of tissues, as well as to careless researchers and journalists who infringed the laws and interfered with the family’s privacy. To highlight the paradox, Skloot refers to the experiences of Henrietta’s daughter Debora:
“Truth be told, I can’t get mad at science because it helps people live, and I’d be a mess without it. I’m a walking drugstore…But I won’t live, I would like some health insurance so I don’t get to pay all that money every month for drugs my mother cells probably helped make” (256).
The spirit of faith, which opposes to the prerogatives of science, is promulgated by the author in her “lifelong struggle to make peace with the existence of those cells, and the science that made them possible” (Skloot 7). In such a way, the author wants to emphasize that science fails to adhere to the most primitive principles of ethics and morality for the sake of discoveries and inventions. In the course of development of HeLa cells project the Lacks family becomes more aware of the legality and ethicality of the given research, as well as their attitude and outlook on science and faith.
Apart from scientific and family issues, The Immortal Life of Henrietta Lacks reflects a critique of scientific discovery that focuses on neglecting the messy origin of human and its materials. In this respect, Skloot writes, “Scientists don’t like to think of HeLa cells as being little bits of Henrietta because it’s much easier to do science when you dissociate your materials from the people they come from” (216). Focusing only on medical purposes of microbiology, science relieved itself from the responsibilities and duties imposed by the rules of morality and ethics, which were not considered yet during those times.
In the book, much concern is connected with the way Henrietta expressed her attitude toward her illness, as well as how the members of her family considered Henrietta’s serious diseases. To emphasize the deep faith into Henrietta as personality, Sklook writers, “Hennie didn’t fade away, you know, her looks, her body, telling that she wasn’t gonna be alive no more” (64). Thus, the mystery of the Lacks family’s visions, perceptions, and attitudes contradicted the existing views on medicine and science. In the book, the author emphasizes, “…She’s the most important person in the world and her family living in poverty. If our mother is so important to science, why can’t we get health insurance?” (162). Deep faith into the immortality and legacy of asking for health insurance undermines the legacy of scientific inventions based on ignorance of lacks family.
Henrietta’s family, thus, was unaware of the “immortality” of Henrietta’s cells until twenty years had passed after her death. The author introduces evidence of scientists using Henrietta’s children and husband cells without formal consent. Despite the fact that the cell project had introduced a multimillion-dollar business selling human biological materials, Lacks family never received a cent of the profits.
As a result, Skloot becomes more concerned with lives and experiences of the Lacks family, particularly that of Henrietta’s daughter Debora, who was really shocked to learn about the existence of her mother’s cells. Indeed, she was overwhelmed with questions about her mother. Debora longed to know everything that related to scientific research, as well as to the peculiarity of her mother’s cells. She also raised questions about cloning and she was interested in the fate of her sister Elsie. With regard to the above-posed questions, the ethical issues raised in the book are interconnected and extremely complicated.
Since the death of Henrietta and discovery of “immortal cells”, science has experienced significant advances and overshadowed people’s ability to understand whether it is right or wrong to use human cells as a biological material that could save lives of other people and that could bring in significant achievement to medical world. In 1980s, the practices similar to those occurred to Henrietta Lacks, were also help with other people, without their knowledge and consent. However, this was the first time when the family of the patient filed a lawsuit and the California Supreme Court upheld the decision to provide patients with the right to protect their issues from external intrusion and unlawful intrusions for scientific purposes.
What is more importantly, the court recognized that the doctors should reveal their actual financial and economic interests, as well as consider legal issues before removing cells and other tissues from their patients. In addition, the legal system has gradually evolved to have introduced new limitations and patient protections to increase legal and ethical responsibility that should be imposed on doctors. Several decades later, the RAND Corporation estimated the profits received by American laboratories received over 307 million samples of tissues from 178 million people (Skloot 5).
Thus, the author notes that the question of obtaining form consent from the patients and their families to store cells has not been revealed yet, as well as the question of profitability of tissues research and distribution. Nowadays, HeLa cells weight is estimated as over 50 million metric tones (Skloot 4). Thus, discoveries have been introduced, careers have been promoted, profits have been advanced, and human lives have been returned. After two decades of ignorance, the Lacks family received compensation, as well as recognition for Henrietta’s cells legacy. The acknowledgment of the health insurance was due to the emergence of the concept of informed consent that evolved in medical sphere.
Aside from the legal and ethical issues, there is much mystery about the immortality of human cells that did not die like cells of other people. Skloot has initiated an extensive research related to Henrietta’s genome and a combination of diseases to find answers to this problem, but she has failed to resolve the issues. Within these perspectives, HeLa cell line cannot be explained within scientific perspectives, but with the help of the information from beyond. At this point, the author refers to the faith of healing and immortality of Henrietta’s soul.
This is where scientific understanding and religion faith collide and highlight the boundaries of the explicable and the non-explicable. Religious power is strongly associated with the beliefs of the Lacks family. Their views on man’s destination related to the assumption that “man brought nothing into this world and he’ll carry nothing out. Sometimes we care about stuff too much. We worry when there’s nothing to worry about” (Skloot 264). The secret of immortality, therefore, relied heavily on the concept of faith and commitment to religion.
Faith perspectives are also revealed in the following passage: “Henrietta had been chosen by the Lord to become an immortal being. If you believe the Bible is the literal truth, the immortality of Henrietta’s cells makes perfect sense” (Skloot 296). Thus, much content has been expanded through religious prism, which is also discussed in the book as the concepts of heavenly bodies and soul cleansing. While analyzing the last part of the book, it can be understood that Henrietta Lacks and Deborah were committed to faith. In fact, religion and faith have always been treated as the ones opposed to science. Moreover, the author emphasizes that faith have played a vital role in healing and health in African-American culture.
In conclusion, it should be stressed that The Immortal Life of Henrietta Lacks reflects a story intertwined with sophisticated experiences related to science, faith, religion, and medical ethics. The author has managed to explore interesting and fascinating topics which touch on the eternal confrontation between science and faith. On the on hand, the immortality of HeLa cells is considered a phenomenal scientific discovery that has introduced significant advances to medical sphere as well.
On the other hand, the book reflects the matters of faith and religion that explains the immortality and uniqueness of cells, which could not bed explained by science. Finally, the book is also a reflection on the sufferings and hard experiences of the Lacks family that had been living in ignorance for two decades. Thus, the author is more concerned with the concept of ethics, morality, and faith, as well as their impact on the development of science.
Skloot, Rebecca. The Immortal Life of Henrietta Lacks. US: Crown, 2010. Print.
Henrietta Lacks: Used as a Means to an End
“We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph.”
Every person on Earth is multi-faceted: each has more sides to him or her than one would expect. This is why problems occur when people are treated as one-dimensional characters, as this perspective conflicts directly with an individual’s inherent human nature. In The Immortal Life of Henrietta Lacks by Rebecca Skloot, both the media and the scientific community are guilty of treating the Lacks family as a mere collective tool; only Skloot herself shows respect for the family.
Science is based on cold, hard facts, and the attitude the scientific community developed is on par with just that mentality: cold and unfeeling. When Henrietta’s cells were taken, she was no longer Henrietta Lacks to the scientists. Instead, she became HeLa, a cell line with no human identity. In fact, there is no recognition given to her for the longest time, and when recognition is given, she is called “Helen Lane” by the scientists and the media for the longest time. It is this attitude towards Henrietta that later is directed at her family. Hsu attempts to draw more blood from the Lackses even after hearing about their hardships: “If they are willing, I wouldn’t mind to go back and get some more blood” (Skloot 190). The consequence of viewing the Lackses as an abstraction is clear in the scientific community; these people, with unique identities, are treated as lab rats. They were only recognized for their medical potential, and so all other merits of the Lackses disappeared in the scientists’ eyes. This approach may seem justified for scientific purposes, but this is a problem because this is a violation of the family’s inherent moral worth. Such an approach is also problematic because it reduces the worth of the Lacks family; if there is no distinction in function between a lab rat and a human, that signifies a serious lack of morality which is bad for society as a whole.
While the scientific community had minimal interest in the actual life of Henrietta, the major news companies had a larger interest. If this interest had been used ethically, the story of HeLa could have been known much better; however, that is not what happened. The media made it seem as though the scientists had done no wrong. During the filming of the BBC documentary, Zakariyya becomes angry because of the claim that Henrietta “donated” her cells to the scientists: “He yelled and threw programs when he saw that they listed…Henrietta as the woman who ‘donated’ the HeLa cells” (220). In this sense, the news companies played a catalytic role in preventing the world from truly knowing the truth. It was because they only viewed the Lacks family as a subject for a story that they did not work harder to find out about the truth. The media also sensationalizes many of the scientific findings using HeLa cells: “One was called HUMAN, PLANT CELLS FUSED: WALKING CARROTS NEXT? The other was MAN-ANIMAL CELLS BRED IN LAB” (238). This tactic only acts to further alienate Henrietta from her family and scares Deborah into believing that her mother had become part plant and was in excruciating pain. The nature of the news stations violates the principle of viewing an individual as a universe; this is why the high-profile media could never help the Lacks family, as the help they needed was not publicity but somebody who would tell their multi-faceted human story.
Rebecca Skloot, as an independent author struggling to write about the truth, was the only person to truly view the Lacks family as a group of people with their own stories to tell. For one, Rebecca did not sensationalize anything she wrote in her book. Her main motive was not money but was the quest to find out more about a topic that seemed shrouded by time. She realizes that the Lackses are a living family rather than a group of test subjects or money-makers, so she sets up the trust fund that helps the Lacks children to further their education in the future. Above all however, she has actual human contact with the family. She talks, eats, and spends sleepless nights with Deborah, learning not only about Henrietta but about the history of Deb’s life as well. She also grows a small bond with Devon, as they get to see each other often through the close relationship Deb and Rebecca maintained. She also does something the scientific community and the high profile media never attempted: she educates the family on Henrietta’s cells. She explains how a cell works to Lawrence and brings Deborah and Zakariyya to learn and see HeLa cells in person.
Although the scientific community viewed Henrietta as HeLa cells and the media viewed her as a way to make more money, Rebecca Skloot saw a damaged family and did something the other two parties failed to do: she viewed the Lackses as individuals, with a universe within them. By understanding the treasures, anguishes, and secrets of the family, Rebecca was able to avoid the consequences of only looking at life in the abstract and was able to help restore an otherwise hurt family.
The Nature of Henrietta Lacks’ Immortality
HeLa cells are the most important discovery in science and have led to many advances in medical sciences. This is due to the fact that these cells rapidly reproduce and have a mysterious trait to them – their immortality. For HeLa cells, it means that they never died which resulted in possible experimentations that could now take place. In classical and contemporary literature, this word represents the never-ending remembrance of the impact something has made throughout its lifetime. The definition of immortality directly represents the woman of the cells, Henrietta Lacks, and she will never be forgotten in the eyes of the world.
One way Henrietta Lacks is immortal is within the memories and hearts of her loved ones. She was a mother, a wife, a sister, and a friend to many, even people she had no relation to. One of her closest cousin recalls, “‘Hennie made life come alive—bein with her was like bein with fun, … Hennie just love peoples. She was a person that could really make the good things come out of you’” (Skloot 43). As the character describes, Henrietta touched the lives of the ones around her and found her own way into their hearts. She made an impact before dying by being a strong and independent African American who was loving and caring. As long as she was living she always put forth positivity and happiness in her surroundings. Adding on, one of Henrietta’s son, Sonny, mentions, “She liked taking care of people, so it made sense what she did with them cells. I mean, people always say she was really just hospitality, … cook breakfast for everybody, even if it’s twenty of them” (Skloot 159). Henrietta carried out her image by always helping and putting others before herself, which she also continues to do with her cells. With this her legacy and her selfless personality, she continues to aid the world by curing many diseases such as polio. Thus, Henrietta’s immortality is shown with the continuation of her nurturing self to her cells.
Debora Lacks, Henrietta’s daughter also became immortal with her actions and decisions she chose to make during the time The Immortal Life of Henrietta Lackswas being made. She herself states, “‘All the stuff I’m learning,’ she said, ‘it make me realize that I did have a mother, and all the tragedy she went through. It hurts but I wanna know more, … It make me feel closer to them, but I do miss them’” (Skloot 288). This quote explains how Deborah pushed through so much pain and mysteries just to learn more about her underrepresented mother. She dedicated time and effort to help the author discover new information and uncover more secrets about Henrietta’s personal life. Debora is one of the reasons why readers know so much about Henrietta Lacks, not Helen Lane or HeLa, and her story of how her cells were stolen from her. Without her daughter and her connections, he author would not have been able to get as up-close and personal as wanted to.
Henrietta Lacks paved the path for minorities, especially African Americans, towards medical rights such as consent in the presence of a physician. Another one of Henrietta’s children, Zakariyya, expresses, “‘Everybody always saying Henrietta Lacks donated those cells. She didn’t donate nothing. They took them and didn’t ask … What really would upset Henrietta is the fact that Dr. Gey never told the family anything – we didn’t know nothing about those cells and he didn’t care’” (Skloot 169). This medical indecently and injustice shows how African Americans were mistreated in hospitals, examination rooms, and operating rooms. The logic behind John Hopkins was that in exchange for medical checkups, the physicians could take some of the patience’s tissue in order to conduct medical research. The author writes, “Like many doctors of his era, TeLinde often used patients from the public wards for research, usually without their knowledge. Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment” (Skloot 30). The underlying problem is that the hospital assumes this exchange and disregards the patience’s consent of using their property as research material. The Lacks’s family was deeply disturbed by John Hopkins specifically with the idea of their mother’s cells being taken without permission and made a ton of money through it, which the family did not receive. This is very ironic due to the fact that some of the family members adopted illnesses that were treatable with the vaccinations made by the HeLa cells, but were too poor to afford it. Due to all of this mishap, the book and awareness of this situation brought justice towards the topic and helped resolve the discrimination for years to come.
In conclusion, Henrietta and Debora became immortal through their actions and impacted individuals for a long time. Their immortality was caused by them causing a change and a positive influence towards their surroundings. Henrietta Lacks specifically was preserved through the hearts of her loved ones and through the progression of racial medical consent. While she was being progressive, Debora made the effort to come out of her comfort zone to help keep her mother’s life alive. Lastly, immortality is something that is amazing in the sense that it will be remembered, praised, and appreciated for a long time.