Category: The Immortal Life of Henrietta Lacks

Abstract

HeLa cells are the cells the whole world knows about: they contributed to numerous medical studies and helped to create medications for serious diseases. Henrietta Lacks is the woman, from whom those cells were taken. However, many fewer people know about her. The cells were taken from Henriettas body without her consent, and for at least twenty years after her death, even her closest relatives were not aware of that. Based on Rebecca Skloots The Immortal Life of Henrietta Lacks, the paper discusses consent and privacy issues connected to the case.

The Immortal Life of Henrietta Lacks

Presently, the whole world knows about so-called HeLa cells that have been used in medical research during the last sixty years. Those helped to understand many diseases, including, for instance, sexually transmitted ones and contributed to the development of medications for treating such illnesses as leukemia, hemophilia, herpes, and Parkinsons disease (Skloot, 2010). However, much fewer people know about Henrietta Lacks, the woman, from whom those cells were taken. Although HeLa led to the most significant changes in medicine of the last century, neither Henrietta nor her family gave their consent to the usage of cells; moreover, they did not receive any benefits, even though many studies were rather profitable.

The Issue of Consent

The first and probably the most important ethical issue Rebecca Skloot (2010) discusses in her book about Henrietta Lacks is the issue of consent. When Henrietta found out that she was ill, she went to Johns Hopkins Hospital in Baltimore, the only place in the area she lived in that provided free services to people without regard to sex, age, or color (Sharpe, 2010, p. 46). There was only one nuance: since doctors provided free services for blacks, they assumed that they had the right to use them for the research at the same time (Stump, 2014, p. 127). Dr. Gey, who treated Henrietta, took the cells from her body, and she was not even aware of that. Although that did not break any laws, Dr. Gey tried to disguise the womans identity, claiming that not Henrietta Lacks but Helen Lane (a fictional name) stood for HeLa, the name he gave to cells.

That is why not many people knew that HeLa cells were somehow connected to the woman named Henrietta Lacks. Although the cells were omnipresent, there was not much information about Henrietta by the 2000s: the majority of sources referred to Helen Lane, and the information about the cause and the time of the womans death was inaccurate (Skloot, 2010, p. 5). During almost sixty years, Henriettas closest relatives were aware neither of HeLa itself nor of the fact that some people were making a lot of money on the research. The Lacks did not get any profit either. While the researchers created enormous wealth for many, Henriettas family could not even afford health insurance (Sharpe, 2010, p. 46). Moreover, the members of the Lacks family were used for the research as well. Skloot (2010) says that while they believed that they were tested to see if they had the cancer Henrietta died from, the researchers used them to understand Henriettas cells better (p. 6).

The Issue of Privacy

In addition to the fact that nobody asked for Henriettas of her familys consent, the researchers also violated privacy concerns. After several studies containing the genomic sequence of HeLa cells were published on the Internet and some of them even were publicly available, both the Lacks family and many researchers became worried about privacy issues (Privacy and protection, 2013). The genomic data is private, and can not be published without consent: it reveals the information impossible to find out in any other way, for example, the information about chronic family diseases that people do not want everybody to know about (Bobrow, 2013).

While many people demand the US National Institutes of Health to take care of privacy concerns regarding the Lacks family, it may already be too late for that. Presently, more than 1,300 gigabytes of genomic information of HeLa are presented on the Internet (Privacy and protection, 2013). Although such kind of information has already been taken out of public access, many people have seen and downloaded it. Even though it may be too late for the privacy protection of the Lacks family, it still must be done. The access to genomic data should be strictly limited and given only to a narrow circle of researchers.

Do People Own Their Tissues that Exist Outside Their Bodies?

With this in mind, another ethical issue arises. Should the Lacks have been provided with some part of the wealth created due to HeLa? Must the researchers tell an individual that his or her cells have been used for medical studies? Do people own or at least control their cells existing outside their bodies? Those are the last things Rebecca Skloot (2010) talks about in her book, and those are the first questions that probably every person asks after examining the case of Henrietta Lacks. Some people would consider that ironic, others would claim that it is unfair, but no regulation answers in the affirmative to any of the questions above (Skloot, 2010). Although some laws regulate the field of medical research (such as the Health Insurance Portability and Accountability Act (HIPAA), for example), none of them addresses ethical issues mentioned in this paper. Nevertheless, taught by the case of Henrietta Lacks, people become more and more aware of those issues. As Patricia Newcomb (2010) states, if people have been glad to participate in the research during the previous years, now they want to talk to their lawyers first.

References

Bobrow, M. (2013). Balancing privacy with public benefit. Nature, 500(7461), 123.

Newcomb P. (2010). Evolving fairness in research on human subjects. Journal of Child and Adolescent Psychiatric Nursing, 23(3), 123-124.

Privacy and protection in the genomic era. (2013). Nature Medicine, 19(9), 1073.

Sharpe, V. A. (2010). One Life, Many Stories. Hastings Center Report, 40(4), 46-47.

Skloot, R. (2010). The Immortal Life of Henrietta Lacks. New York, NY: Crown Publishers.

Stump, J. L. (2014). Henrietta Lacks and The HeLa Cell: Rights of Patients and Responsibilities of Medical Researchers. The History Teacher, 48(1), 127-180.

The Immortal Life of Henrietta Lacks, which forms part of Rebecca Skloots 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 familys 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, Skloots 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 mothers 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, ladys on the phone about his wifes cells (Skloot, 2010, p.52).

Skloot was later to learn that any call that arrived at the widowers house was merely an inquiry call about Lacks cells. Despite Henriettas 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.

Skloots 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 familys privacy by publishing everything from Henriettas medical records to the familys genetic information (p.118).

However, even though one can treat this as Skloots opinion, the scientific researches attract big ethical debates. Deporah, Henriettas 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 mothers 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 Henriettas 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.

Reference List

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 written by Rebecca Skloot raises various contradictions that still have not been eradicated from the contemporary society. In addition, the writing dwells upon the birth of bioethics. This dramatic scientific research has resonated strongly in society, and it inevitably affects everyone who reads the book. The purpose of this paper is to consider the topics raised by this research and to analyze its core underlying messages.

Background

The book tells about a woman named Henrietta Lacks. One day it turned out that she was sick and the doctor providing services to Henrietta took her cells without the woman’s consent. Later, these cells became an important medical tool and caused a major breakthrough in the industry while their owner died without knowing about the contribution she made to the lives of future generations (Skloot 370).

Themes, Formative Influences, and Social Identification

It should be stressed that this book has covered many critical topics. One of them is the theme of suffering. The family of Henrietta Lacks had to face the consequences of slavery and the outcomes of institutionalized racism. As the family was poor and society was full of prejudice, it was impossible to break the circle of poverty and harassment. Many of the family members, as well as Henrietta, were uneducated people; consequently, they were limited in their opportunities (Skloot 299). The formative influence of legal system on the lives of common people resulted in the number of barriers that the family had to overcome.

Another theme is morality and ethics. Although Henrietta was diseased, she did not give her consent for removing the cells for research purposes (Skloot 298). Although she did agree to have the cancer cells to be removed, the woman was not aware that they would be given away for experimentation. The ethics of scientific research lies in the fact that the patient has to be knowledgeable of everything that will happen to his or her cells and Henrietta only knew that cancer cells would be cut away. This difference reveals the ethical violation performed by the scientists.

Notably, the social identity of the family evolves throughout the story. Initially, the family was questioning why scientists were making huge money on Henrietta’s cells whereas they were unable to receive any benefit from them. Nonetheless, Deborah Lacks revealed another perspective on this issue when she expressed her concern that her mother was never officially acknowledged as a person who made all the discoveries implementable (Deborah 301). The financial aspect did not play any significant role since the family wanted that Henrietta’s role in scientific research was recognized.

Also, the theme of race intensifies the ethical dilemma. The woman’s background had a direct impact on the doctor’s unethical decision-making. With the development of the plot, both the family and the readers could comprehend that it was their race that prevented the family from gaining equal access to education and resulted in the improper treatment of individuals from the side of scientific community (Deborah 107). The emphasized exploitation of African-Americans by the scientific world for the sake of financial benefit is the leitmotif of the entire story, and this understanding reveals the core of social identification by this population and all the other groups that still face racial prejudice.

Importantly, the coping mechanisms employed by the family are drastically different. Henrietta lived in a place, which was very close to a setting where Ku Klux Klan used to operate (Deborah 76). The social desensitization by the main character might be considered a form of coping strategy, but it only stressed the process of adaptation to inequity. In their turn, the family tried to fight it, which implied that they were no longer eager to perceive discrimination and consider it tolerable.

Differences

The main difference between my life and the life of the Lacks family is that I have the similar access to education as many other people do. It provides an opportunity to become an educated person who can contribute to the development of society and evolve as a person through learning and cognitive processes. Nevertheless, unfortunately, there is a similarity with the book characters as well. In the contemporary society, there is still place to racism, prejudice, and inequalities since the extermination of these phenomena is a lengthy process, which requires the joint effort of all people inclusively.

Insights

The book pushes towards social action since it is a vivid display of inequality, injustice, and unethical behavior based on prejudice. Not only African-American people still face oppression but also the representatives of other national, cultural, and religious groups. Therefore, it is of paramount importance to combat the existing harassment and abuse. All the people should have equal opportunities to education, healthcare, and services envisaged to the population by the state. Moreover, all people inclusively should be sole owners of their bodies and minds despite their origin or background. Therefore, it is the role of everyone to assist those who are oppressed in fighting for security and social justice.

Conclusion

Thus, the work by Rebecca Skloot is a dramatic story about the fate of an ordinary woman who gave her immortal cells to the world and the way dishonest doctors have influenced the development not only of healthcare but also the life of society in general. One of the most important issues raised by the book is whether people themselves or anyone else (doctors, scientists) are full owners of their bodies and whether other individuals have the right to impose on other people’s rights and freedoms. The book is a valuable and reliable source of information on social injustice, and it drives readers to become active participants in changing society towards becoming harmonious and secure for everyone.

Work Cited

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. Pan Macmillan, 2011.

In her book The Immortal Life of Henrietta Lacks, Rebecca Skloot tells a story of a woman who helped in advancing medical research without knowing it. Skloot (2010) addresses some of the most serious and common ethical issues that arise in medical research as well as nursing practice. Such themes as race, power, and poverty are central to the book. These themes also resonate with experiences every patient and nurse has had at least once in their lifetime. In this paper, I will reflect on the way the book relates to my own practice, experiences, and values.

Although I have never been in a situation similar to Henrietta Lacks, I still had to deal with some aspects of the issue related to the patient’s control over their body. Being a patient, I have signed a plethora of consent forms where I confirmed my decision to go through certain procedures or agreed to have my data used for some statistical purposes. I cannot remember, however, whether I signed a form concerning my agreement to donate my cells for the purpose of research.

As a nurse, I also have handed consent forms where patients agreed to certain procedures. I believe the situation with Henrietta Lacks is completely unacceptable and unlikely to happen in the contemporary healthcare setting in a developed country. Modern researchers pay specific attention to ethical issues as they have to comply with quite rigid standards that have been developed in the course of debate concerning the cases such as Henrietta’s.

As far as I am concerned, I would feel angry and committed to act if I, being a patient, learned that I had not been in control over my own body. My firm belief is that an individual’s personal rights are the highest priority, even if other people’s wellbeing can be affected. I have no doubt that the person has the right to decide what to do with their body. Likewise, the individual who can donate something is the one to decide whether others would benefit from this.

If I found out that my cells were taken without my consent, I would go to the court and draw the public attention to the matter. Unfortunately, Henrietta and her family did not have such an option in the middle of the 20th century. At this point, I would like to note that my feelings could be different if I was “the other” and had to live as a representative of a minority group. As far as I remember, I have never been “the other” or felt that way. At least, I cannot remember any serious situations related to otherness.

After having read the book, I reflected on the responsibility of a nurse to make sure that the patient’s rights are met. I believe that nurses involved in the cases (especially Margaret or Mary, who helped doctor Gey) shared partial responsibility. The nurses who were aware of the research had to tell the patient and her relatives about the doctor’s actions or, at least, could ask the doctors about those people’s consent. The nurse should ensure that her actions are ethical, but it is also critical to encourage (or inspire) other healthcare professionals to act in accordance with ethical codes or share certain values.

My cultural values are consistent with my spiritual foundation, which makes me act in an ethical way and encourage other people to think about the consequences or morality of their actions. I am a Christian, and I believe in the betterment of humankind. Perhaps, this is the reason for my focus on personal rights. I believe that all people will voluntarily share what they can if it can help others. Of course, some people need some time to understand and accept their better half, but this will inevitably happen. Therefore, it is impossible to take something from a person without their consent or even knowing it, even if it can save millions of people. I strongly believe that Henrietta would voluntarily give her cells for research, so there was no need to conceal this information.

At that, the healthcare professional’s attitude was a norm and was not considered immoral at the time when the US society was segregated. Race-related ethical issues are central to the book in question. It is not only about the question of whether the patient has the right to know and decide. Skloot (2010) makes it quite clear that discrimination, race, and patients’ financial constraints were some of the major aspects that led to the unethical conduct of the healthcare staff. The desire to make a profit was another premise for doctors’ actions. Many people (including researchers, doctors, pharmaceuticals, to name a few) made huge profits but never shared a part of the money with the family that lived in poverty.

In conclusion, the book under consideration unveils some of the most challenging issues yet to be solved. Clearly, in developed countries, it is hard to imagine that such a situation can happen again. However, healthcare professionals still may act in an unethical way in various aspects of their practice. The book made me feel stronger about my own values. I am committed to ensuring patients’ safety, autonomy, the right to decide, and the right to know. Nurses share responsibility, so I will try to be more active when advocating for patients’ needs and rights. I will also try to encourage my colleagues to conduct ethically in all situations.

Reference

Skloot, R. (2010). The immortal life of Henrietta Lacks. New York, NY: Crown Publishing Group.

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.

Reference List

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.

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.

Works Cited

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. US: Crown, 2010. Print.

In her article, Rebecca Skloot is concerned about the medical community exploiting people. In ‘The Immortal Life of Henrietta Lacks,’ Rebecca Skloot explores non-consensual exploitation. The book braids together the scientific community in a story about race, power, and poverty. Before her death, doctors cut out cancer cell samples from Henrietta, which are later used for indefinite multiplication in the lab environment (Skloot 16).

The cells drawn from Henrietta allowed scientists to make significant advances in modern medicine. However, Henrietta did not consent to the removal of the cancerous cells from her body. The cell line from Henrietta, which scientists call HeLa, lived outside the body as they did inside her, allowing researchers to study human cells. Even more inhumane, is that the scientific community only informed Henrietta’s family about HeLa cells twenty-five years later. According to the family, they felt exploited by the press and science. At the time, it was not legal to take tissues from patients to use for research despite the legal cases surrounding the cases. The current case study explores the scientific community’s use of prestige and power to exploit people while neglecting concerns of ethics in research.

In expressing the power of education, Sloot talks about race, poverty, and the powerlessness resulting from the absence of education. Skloot (27) discusses scientific ambition in a twist that saw Henrietta’s cells used to treat basic flu and ghastly cancers. The jackpot of cells, which were packaged and shipped globally, acted as a lab workhorse. Skloot’s book shows the family’s enragement about the exploitation and their powerlessness after the court’s ruling.

However, the privilege of the research company deserves a third eye as they trampled on the family in a way that did not mirror ethical principles (Skloot 27). When Henrietta’s case was taken to court, a ruling was passed to favor medical research. The court argued that medical research was more important as compared to attachment feelings. The courts should have handled Henrietta’s case differently by considering values such as autonomy and personal freedom. This should have taken precedence over scientific advancements (Skloot 16). Even today, the ethical issue surrounding the taking of samples for research is a concern.

The ethics in tissue research spills over to issues of culture and class. Henrietta visited a Baltimore Hospital for women of color to receive treatment because of the segregation laws that existed at the time (Skloot 27). Doctor Richard Wesley withdrew a sample of tissues from without the consent of Henrietta before taking them to Doctor Gey. Doctor Gey accepted the samples and proceeded to handle the tissues without notifying the patient. “Gey still got excited at moments like this, but everyone else in his lab saw Henrietta’s sample as something tedious—the latest of what felt like countless samples that scientists and lab technicians had been trying and failing to grow for years” (Skloot p. 33).

The debate centered on research practices that viewed humans as research. It is evident that scientists considered themselves privileged and of a higher class than patients such as Henrietta. The relationship between the Doctor Wesley, Doctor Gey, and the patient was imbalanced as power and privilege took precedence (Skloot 27). The imbalance still exists in today’s environment, just as its deep historical roots go. The issues of power and privilege bring up ethics and culture in today’s environment.

Although Henrietta’s family is proud of the contribution that HeLa cells are making to the society, her daughter wants to learn how to use the cells, while protecting their privacy. This is the only possible way of consenting to the use of the cells. Henrietta’s daughter insists that the researchers have to acknowledge that the cells are not anonymous if they are to treat them accordingly. Skloot’s book analyzes social power and authority in ways that define the objectives of moral inquiry. In a show of negative power and privilege, the scientific community only called Henrietta’s family after her death, if there was an issue to do with the HeLa cells.

John Hopkins Hospital did not sell the cells but made enormous profits from the cells. The journalists and researchers proceeded to publish information that violated the family’s privacy. This included the medical records as well as the genetic information of the family. Henrietta’s daughter Deborah states that she cannot get mad at the scientists because of its value in giving life (Skloot 27). However, she acknowledges herself as a walking drug store only hoping to get a portion of the health insurance to avoid paying for drugs that her mother’s cells probably helped make.

Arguments on whether taking a tissue sample for use in research without consent is legal still abound. The book criticizes the ignorance of science, which dissociates cells as part of the person. Scientists argue that it is what makes it easy for researchers to do science. Yet, the lack of consent damages public trust in science, something the scientific community care little about. The exploitation of Henrietta’s family was an ordeal that the company did not have to endure.

The family of Henrietta did not have to contemplate the systemic exploitation by the scientific community. Studies show that people feel attached to body parts, even if they are small issues. The company is transparent and accountable, given its relation to racial and class privileges. Henrietta’s case is classical exploitation resulting from power and influence that patients face in their everyday lives, especially regarding consent to research.

Works Cited

Skloot, Rebecca. The Immortal Life of Henrietta Lacks, New York, US: Crown/Archetype, 2010. Print.

Abstract

HeLa cells are the cells the whole world knows about: they contributed to numerous medical studies and helped to create medications for serious diseases. Henrietta Lacks is the woman, from whom those cells were taken. However, many fewer people know about her. The cells were taken from Henrietta’s body without her consent, and for at least twenty years after her death, even her closest relatives were not aware of that. Based on Rebecca Skloot’s The Immortal Life of Henrietta Lacks, the paper discusses consent and privacy issues connected to the case.

The Immortal Life of Henrietta Lacks

Presently, the whole world knows about so-called HeLa cells that have been used in medical research during the last sixty years. Those helped to understand many diseases, including, for instance, sexually transmitted ones and contributed to the development of medications for treating such illnesses as leukemia, hemophilia, herpes, and Parkinson’s disease (Skloot, 2010). However, much fewer people know about Henrietta Lacks, the woman, from whom those cells were taken. Although HeLa led to the most significant changes in medicine of the last century, neither Henrietta nor her family gave their consent to the usage of cells; moreover, they did not receive any benefits, even though many studies were rather profitable.

The Issue of Consent

The first and probably the most important ethical issue Rebecca Skloot (2010) discusses in her book about Henrietta Lacks is the issue of consent. When Henrietta found out that she was ill, she went to Johns Hopkins Hospital in Baltimore, the only place in the area she lived in that provided free services to people “without regard to sex, age, or color” (Sharpe, 2010, p. 46). There was only one nuance: since doctors provided free services for blacks, they assumed that they had the right to use them for the research at the same time (Stump, 2014, p. 127). Dr. Gey, who treated Henrietta, took the cells from her body, and she was not even aware of that. Although that did not break any laws, Dr. Gey tried to disguise the woman’s identity, claiming that not Henrietta Lacks but Helen Lane (a fictional name) stood for HeLa, the name he gave to cells.

That is why not many people knew that HeLa cells were somehow connected to the woman named Henrietta Lacks. Although the cells were “omnipresent”, there was not much information about Henrietta by the 2000s: the majority of sources referred to Helen Lane, and the information about the cause and the time of the woman’s death was inaccurate (Skloot, 2010, p. 5). During almost sixty years, Henrietta’s closest relatives were aware neither of HeLa itself nor of the fact that some people were making a lot of money on the research. The Lacks did not get any profit either. While the researchers “created enormous wealth for many”, Henrietta’s family could not even afford health insurance (Sharpe, 2010, p. 46). Moreover, the members of the Lacks family were used for the research as well. Skloot (2010) says that while they believed that they were tested to see if they had the cancer Henrietta died from, the researchers used them to understand Henrietta’s cells better (p. 6).

The Issue of Privacy

In addition to the fact that nobody asked for Henrietta’s of her family’s consent, the researchers also violated privacy concerns. After several studies containing the genomic sequence of HeLa cells were published on the Internet and some of them even were publicly available, both the Lacks family and many researchers became worried about privacy issues (“Privacy and protection”, 2013). The genomic data is private, and can not be published without consent: it reveals the information impossible to find out in any other way, for example, the information about chronic family diseases that people do not want everybody to know about (Bobrow, 2013).

While many people demand the US National Institutes of Health to take care of privacy concerns regarding the Lacks family, it may already be too late for that. Presently, more than 1,300 gigabytes of genomic information of HeLa are presented on the Internet (“Privacy and protection”, 2013). Although such kind of information has already been taken out of public access, many people have seen and downloaded it. Even though it may be too late for the privacy protection of the Lacks family, it still must be done. The access to genomic data should be strictly limited and given only to a narrow circle of researchers.

Do People Own Their Tissues that Exist Outside Their Bodies?

With this in mind, another ethical issue arises. Should the Lacks have been provided with some part of the wealth created due to HeLa? Must the researchers tell an individual that his or her cells have been used for medical studies? Do people own or at least control their cells existing outside their bodies? Those are the last things Rebecca Skloot (2010) talks about in her book, and those are the first questions that probably every person asks after examining the case of Henrietta Lacks. Some people would consider that ironic, others would claim that it is unfair, but no regulation answers in the affirmative to any of the questions above (Skloot, 2010). Although some laws regulate the field of medical research (such as the Health Insurance Portability and Accountability Act (HIPAA), for example), none of them addresses ethical issues mentioned in this paper. Nevertheless, taught by the case of Henrietta Lacks, people become more and more aware of those issues. As Patricia Newcomb (2010) states, if people have been glad to participate in the research during the previous years, now they want to talk to their lawyers first.

References

Bobrow, M. (2013). Balancing privacy with public benefit. Nature, 500(7461), 123.

Newcomb P. (2010). Evolving fairness in research on human subjects. Journal of Child and Adolescent Psychiatric Nursing, 23(3), 123-124.

Privacy and protection in the genomic era. (2013). Nature Medicine, 19(9), 1073.

Sharpe, V. A. (2010). One Life, Many Stories. Hastings Center Report, 40(4), 46-47.

Skloot, R. (2010). The Immortal Life of Henrietta Lacks. New York, NY: Crown Publishers.

Stump, J. L. (2014). Henrietta Lacks and The HeLa Cell: Rights of Patients and Responsibilities of Medical Researchers. The History Teacher, 48(1), 127-180.

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.

Reference List

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.