Category Archives: The Immortal Life of Henrietta Lacks II

The lack of consent and it’s political intersections: The immortal life of Henrietta Lacks

Upon reading The Immortal Life of Henrietta Lacks, as a black person in America, I had my own set of realizations and ideations regarding the experience and misfortune that Ms. Lacks faced. It moved me beyond the parameters of philosophical ethicality, and into a medium of observation that felt so much more real. As a result of the color of her skin, Lacks was utilized in a tool like fashion for the perceived benefit of science regarding the development of a polio vaccine and a lead on the mystery of cancer. At face value, one may understand these goals to be noble and justify the actions of the doctor who navigated his research without seeking any measure of consent from Ms. Lacks. It is crucial to understand here that the intersections that existed, and still currently exist, between racial societal dynamics, the subsequent power structures in place, and the course of action taken in John’s Hopkins hospital in 1951 largely influence and play into the functionality of informed consent in our healthcare system. The harvesting of Lacks’ cancer cells was done without caution and rudimentary hospital procedure by Dr. Howard Jones and Dr. Greg Gey. The unsolicited removal of her cancer cells and her consequently worsening condition buries its roots not only in the doctors’ infatuation with a scientific breakthrough, but is paired along with a societal paradigm that cemented a racial hierarchy into its structure. The fact that Ms. Lacks was a Black woman adds layers of contextual data to the overall history of the events that transpired the manifestation of the HeLa cells. Even beyond her death, the family of Ms. Lacks has seen no benefit for the complete exploitation of Ms. Lacks’ condition. The constituent conversations about the lack of ethicality and moral righteousness should not fail to include an analysis of the racial and socio-political system that existed in the 1950’s. The mirroring socio-political framework that we maintain today has its own implications when it comes to the informed consent of patients who come from minority backgrounds. The likelihood of receiving additional testing and proper follow up care is very diminished in groups that exist on the lower end of the racial hierarchy in America, and identifying the connection between the historical precedent that exists within The Immortal Life of Henrietta Lackswas nothing short of riveting.

The Lacks Family

Though the HeLa Factory had good intentions to stop polio, the development of an industrial scale cell culturing facility showed how close the relationship between business and medicine truly is. The HeLa cells became scientific property, allowing Henrietta Lacks’s name to be erased with each new vial of the cell culture. After the polio testing, HeLa cells were used to study genetics, nuclear physics, cosmetics, and kick-started the cell-culture industry. What started out as one woman’s tumor cells became a money-making machine. The question of her consent was quickly forgotten, instead replaced by the question of how many HeLa cells could be grown and sold. 

The research industry was thriving off of a nonconsensual donation of cells and had no intention of thanking the Lacks family for their mother’s contribution to science. While the HeLa factory was booming, Henrietta’s children were being abused and neglected by Ethel, their caretaker. Lawrence, the oldest son, was so short on money that he lied about his age to get a job. Though this helped him gain employment, it also made him eligible for the draft, leading him to be unfairly sent to war at a young age. During this time, Dr. Gey had an intense desire to keep Henrietta’s name private, so her children did not even know that their mothers’ cells were at the forefront of modern research. Was this stance actually to protect the family’s privacy, or was it yet another way that Dr. Gey found to make the HeLa cells seem less human? Was this his way of trying to make up for the lack of Henrietta’s complete consent while she was alive? It is quite clear that Henrietta was never given full information about her surgery and medical care. She did not know that the surgery would render her unable to have children and claimed that she would not have followed through with the treatment if she had known. After her death, though, doctors went to extreme lengths to obtain her husband’s consent for an autopsy. They valued Henrietta’s life only after it ended, just like Dr. Gey valued her right to privacy only after it was no longer needed. Researchers thought that understanding the exact cause of death and potentially getting a few more cell samples was more important than preserving her body in the way that her husband wanted to. 

With all of the injustices that surrounded both Henrietta and her family, it is almost challenging to focus on the scientific advancements of the HeLa cells. The lack of any sort of financial compensation left the Lacks family unable to purchase health insurance, blocking them from reaching their normal functioning. Though some compensation would have been appreciated, is there really anything that could have actually remedied this situation for the Lacks family? Her children lost their mother, her husband lost his wife, and her community lost a dear friend. With all of the pain that surrounded both her cancer and death, would understanding that Henrietta’s cells were helping others have made it any easier on the Lacks family?

Henrietta Lacks and the Issue of Ownership

In Part II: Death of The Immortal Life of Henrietta Lacks, Rebecca Skloot details what happened with both HeLa cells and Henrietta’s family after her passing. At the same time as the Lacks family was trying to move on and mourn the loss of Henrietta, the science world was booming due to the new research capabilities that Henrietta’s cells provided. 

I had a major issue with the stark contrast in the way Henrietta was treated when she was a patient at Johns Hopkins compared to the way her body was treated following her passing. While Henrietta was alive, her doctors took cells from her body without even asking her, even though she should have been the person with true ownership over the cells. However, after Henrietta’s passing, the doctors were extremely careful to receive permission from Henrietta’s husband, Day, before performing an autopsy. Skloot explains that although doctors were not legally required to ask a living patient for permission to take their tissue, it was illegal to remove tissue from the dead or perform an autopsy without consent from a family member. I find this extremely troubling: it seems as though at this time, the law truly had more respect for a dead patient’s will than that of a living one. Obviously respecting the dead is crucial, but any living person should obtain full ownership of their body. 

The issue of ownership also comes up when discussing the use of Henrietta’s cells by scientists without any permission from her family. Although her body was treated with this respect, her family was not even informed that doctors had taken Henrietta’s cells to use for research. Without any of the Lackses knowing it, HeLa cells became a celebrity in the science world, with doctors everywhere trying to obtain them to conduct all different types of research. When Dr. Gey became frustrated that the use of HeLa cells had become so widespread, Dr. Charles Pomerat told him that the cells were now “general scientific property,” and could be used by anyone in any way they wanted (p. 104). This use of the term “general scientific property” struck me: these cells, which were hardly recognized as belonging to Henrietta, were now recognized as belonging to anyone who wanted them. Just as the doctors took ownership over Henrietta’s cells after removing them from her body, they took full ownership over any profits that would be made as a result of Henrietta’s contribution. While scientists were granted with the opportunity to make tremendous profits from research that couldn’t have been conducted without HeLa cells, Henrietta’s family lived in poverty with no health insurance. 

Even though Henrietta’s family was able to take some form of ownership over her body by giving permission for an autopsy, they had no ownership over the HeLa cells and the profits that were made off of them. The ownership that was taken from both Henrietta and her family regarding her cells is a tremendous ethical violation.

Kantian Ethics and a Discussion on Decadence in Examining Henrietta Lacks

In Part II of The Immortal Life of Henrietta Lacks, Skloot dives deeper into the issues of unethical medical paternalism to provide a thrilling narrative about the theft and exploitation of Henrietta’s cells, focusing special attention on on the divergences between these two entities: 1) the person, who experienced tragic treatment and suffered from institutional poverty, and 2) the cells themselves, which to this day remain very much alive and well. The narrative begins with Gey requesting an autopsy, and the author here draws a clear distinction by mentioning that Gey had to get consent from Henrietta’s family in order to conduct the procedure. Here Skloot begins to introduce the theme that as a corpse, as a piece of biomedical material, Henrietta’s body is seen from an economic standpoint, which makes it easier to treat it as a commodity. This theme runs throughout this entire section of the novel. The story then details Henrietta’s funeral, and the author is sure to include another philosophical symbol, the storm. Henrietta’s cells are used to test the polio vaccine, and are vastly effective in developing it. HeLa grows in popularity soon after, but Dey, specifically, is hesitant to take credit. Three doctors then grossly misuse HeLa cells in their own practice through human experimentation, but nevertheless, HeLa cells become ubiquitous in the medical landscape. Meanwhile, Henrietta’s family suffers crippling hardship and destitution. Henrietta’s cells were being used to save lives, but her own family could not afford health insurance. 

Within Part II, numerous moral and bioethical issues are expressed, but the one I found most salient and profound was the distinct shift in focus from the issue of informed consent to that of ownership. While Henrietta was alive, doctors could exercise medical dominion over her under the guise of treatment and paternalism. The taking of tissue from Henrietta did not require consent, but the autopsy specifically did. This shifted the discussion from informed consent, which heavily relates to the living, to ownership, which largely dictates inanimate objects. This made me ponder the language surrounding the deceased and, more specifically, autonomy itself. Autonomy should refer to the living, but this societal reverence we place on the dead has highly autonomous language. I began to investigate the steps within the narrative to examine this unique relationship. Part of the reason for this difference, is that while she is alive, her cells are taken under the guise of curing and treating her, but after she has died, exploiting her body would specifically be for other reasons. They would be more directly “using her.” This significantly crosses the lines laid by Kantian ethics, which while allowing for people to be used as means, also dictates that those people are also the ends of the use. As a response to this however, Henrietta’s tissue becomes a medical commodity, transforming the issue into an economic consideration; once the issue becomes economic, it becomes easier to view her body and her tissue as biomedical material, and largely becomes an issue of ownership. I believe these ethical considerations to be well founded and strong arguments that build the subtext of the story. However, I do indeed pose some questions regarding their scope. If we abandon the Kantian interpretation and work within a utilitarian framework, I question if it can also be argued that since so many lives were positively impacted, the harmful actions of consent-overreach are negated or at least diminished in their immorality. I also question if Gey was genuinely trying to protect Henrietta’s privacy or if it was a matter of pride, guilt, and ownership.

This theme once again appears in the narrative during the discussion of the historical significance of “Night Doctors,” but this issue can be considered using other moral and ethical prescriptions as well. The narrative reveals that the practice and legacy of night doctors extends all the way back to slavery. This practice saw the commodification of black bodies and these entities were considered to be raw material. Once again this pulls on the notion of ownership and commodification, in that when viewing a patient or even a dead body as biomaterial instead of giving due reverence, it becomes vastly easier to view these issues through an economical sense, and treat these entities how we would treat any other economic commodity. Numerous ethical principles advise against such thinking, such as virtue ethics, which emphasizes the character, honesty, and individuality of the human form to be the most principled approach to ethics. I personally considered a philosophical theory I have been investigating independently to understand these issues: decadence. Decadence, from a societal and philosophical standpoint, largely refers to a perceived decay in standards, morals, honor, and discipline at the higher echelons of a state, and I believe this perspective can be a vital tool to understand the ethical dilemmas in this novel. I consider the systemic and institutionalized practice of these “night doctors” during the time of slavery, the subjugation of people of color described in the novel during the time of Henrietta Lacks, and the discussion in the novel of the current systemic practices in healthcare that disproportionately affect Black Americans to be emblematic of individual decay in cultural values and societal morals in the lack of reverence we award to people of color. 

However, this unique perspective also poses some interesting questions. If these practices are so systemic and institutionalized, how do we begin to ethically and fairly dismantle systems of marginalization? If we only view these issues from a perspective of decadence, how do we account for the progress that society has made in the realm of race relations? These two realities are not mutually exclusive. We can accept that we live in an institutionally racist society without discrediting the progress that we have made. In my opinion, this duality can be extrapolated to once again represent Aristotelian ethics, in that as a society, our habits are warring with our experiences, battling for the soul of our character. Through gradual changes in cultural attitudes, we are pursuing perfection in egalitarianism, and in that pursuit itself, I believe we are intrinsically good. 

Consent and Power Dynamics

Throughout The Immortal Life of Henrietta Lacks, multiple examples are given of doctors and scientists using their power to coerce consent from patients and research subjects. They have privilege as well-educated doctors or scientists and usually as wealthy, rich, white men. Two large examples caught my attention in part two of the book. Both of these examples came from Chester Southam’s research on whether HeLa cells could cause cancer in those exposed to the cells. His main research subjects consisted of a group of cancer patients and a group of prisoners that willingly volunteered to be a part of the study. Both of these populations clearly held less power and influence than a well-established and respected virologist such as Southam. 

In the case of the cancer patients, Southcam lied about the purpose of his injections of HeLa cells and claimed he was “testing their immune system.” These patients, already ill and most likely less educated in the field of cancer research than Southam, were not in a position to question a prominent figure in the medical field when he promised he was trying to help them. The prisoners in the study were clearly in a vulnerable position compared to Southam when they volunteered. As prisoners, their autonomy had already been limited and Southam further relied on the prisoner’s feelings of moral insuperiority to gain consent. Many prisoners cited a need to make amends for their past crimes as their reasons for joining the study. 

The examples above show extreme power imbalances between a scientist or doctor and patients or research subjects. However, it does lead me to question at what point we can truly deem a patient or research subject to be in an empowered enough position to truly give consent to physicians or researchers. Most who participate in a study or go to a physician are not as well-educated in the fields of medicine or science as the scientist or doctors they give consent to. There is a focus on educating patients and research subjects enough to guarantee “informed consent.” The complication with this concept is quantifying whether a subject’s or patient’s comprehension of the information they have been given is sufficient. Additionally, in the case of patients, those who seek out treatment from a doctor are typically already ill and must rely on their doctors to receive treatment, making coercion a greater possibility. I question the ability of acquiring valid informed consent in a society where inequalities are so prominent. 

Gold, HeLa, and Glory: Medical Paternalism as a means to colonize the Medical field

In the second portion of The Immortal Life of Henrietta Lacks, we see the very worst sides of medical paternalism to the point where doctors and scientists truly believed their desires surpassed the human rights of their patients and that requiring them to act ethically was an infringement upon their rights as professionals to perform their jobs. To them, patients and research subjects were all disposable vessels used in the name of science and discarded for the sake of glory amongst their peers. Gey,Wilbur, and Southam exist as the noticeable culprits of this offense but the entire medical and research community is to blame.

I need to clarify that Henrietta’s cells were not simply “taken” or “used”, these words wrongfully sugar coat the offense: her body was stolen and sold by a white man who intentionally ignored a black woman’s humanity. Dr.Gey’s obsession with being the first researcher to grow human cells in a lab trumped Henrietta’s human right to possess and control the contents of her body – it was never about science, it was about recognition. Even after death, Henrietta was unable to rest as Hopkins pushed her husband to release her body for research even though her husband said no. It was only when Day was fraudulently coerced into believing his children would benefit from the procedures that he gave permission. Coercion is not consent and Dr.Wilbur knew this but he wanted Henrietta’s cells and he knew he had the power to take them simply because of his title. As Day put it, “…they is the doctor, and you go to go by what they say” (p.165).

It’s also absolutely necessary to point out how their position as white men in society contributes to the validation of their use of medical paternalism as a weapon against ethical practice. It took three Jewish doctors to confront and hold accountable one white researcher. A claim was even made against them that they were being too sensitive about their Jewish culture! As Skloot pointed out, Southam wasn’t even a doctor and thus wasn’t withholding information for the sake of any patients but was rather blatantly using deceit for his own personal gain. Here we see once again the lust of one outweighs the lives of many in the name of (faux) medical paternalism. Why were their wants more valuable than the need for consent? Was their research ever truly about the advancement of science or was it all for self-gratification?

Henrietta’s Glorius Life (After Death)

In Part II of the Immortal Life of Henrietta Lacks, Skoot dives into the “immortal” aspect of Henrietta’s life by commencing with her death and continuing with the prosperous life of her cells. Once again, we are reminded of the completely unethical practices performed on her to obtain said cells, and the continuous disrespect of her humanity. In fact, Mary, the lab assistant who actually cultured Henrietta’s cells, said that she never even considered Henrietta to be “human”, which begs the question, what did she consider Henrietta?

“When I saw those toenails,” Mary told me years later, “I nearly fainted. I thought, Oh jeez, she’s a real person. I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we’d been working with all this time and sending all over the world, they came from a live woman. I’d never thought of it that way.”

Obviously this caries a racial undertone, that is heavily present throughout the duration of the book. This can be vastly contrasted with the glorious life that lives on beyond her death through her HeLa cells. Moreover, although her cells are treated like royalty, as Skoot describes in her book, Henrietta’s family continued to suffer from poverty, disrespect, mental and health issues. Although Henrietta had unintentionally contributed to science today, she received no benefits, recognition, or benefits to her and her family’s legacy.

The HeLa cells, that live on until today, were/have been viewed as the property of science. From a Utilitarian perspective, this is completely fine because although Henrietta’s life was lost, her cells have benefitted millions of people around the world through their paving of the way for advancements in cell culturing-a field I’ve worked in for multiple years. However, this is where the Utilitarianism’s paradoxical nature becomes apparent in that its aim is to benefit the most people possible, even at the expense of other’s lives, therefore still hurting others. Once again, this contrast can be seen in the abandonment of Henrietta and her family while many others benefitted. All in all, this shows how although philosophers attempt to deeply understand humans and their lives, some things, like morality and emotions, are not easily qualifiable.

Part II of Lacks: Is the Separation of HeLa and Henrietta Lacks Justifiable?

In Part II: Death of The Immortal Life of Henrietta Lacks, Rebecca Skloot illustrates the years succeeding Henrietta’s death. The immediate impact of HeLa, Henrietta’s immortal cells, on the cell-culture industry, and additional misleading truths of the care displayed by Johns Hopkins and Dr. Gey in Henrietta’s medical case are put on full display. At first glance, it is very clear that HeLa and Henrietta Lacks are two completely different living beings. Not only from the point of view in physical health and welfare, as HeLa is booming and Henrietta’s family is struggling in poverty, yet from multiple philosophical points of view it can be concluded that the separation of HeLa and Henrietta may not be justifiable. 

From the utilitarian scope, HeLa being distributed, leading to profits in the cell-culture industry and medical breakthroughs, may be reasonable at the very low cost of Henrietta’s family (many suffering from health conditions). HeLa was distributed not only around the nation but eventually around the globe due to Dr. Gey’s initial findings of being able to ship it successfully. At this point in the novel, the researchers and doctors see HeLa as an immortal gold mine of biomedical findings to be “pushed and shoved” to its limit. The cells grew to the point of “general scientific property”, according to Skloot (104). The cell-culture industry is booming due to Henrietta Lacks’s cells. Because of this gold mine characteristic, the overall benefit and good society receives is monumental. However, this utilitarian perspective seen by Dr. Gey and many other doctors disregards the moral beliefs, more specifically autonomy and “justice as fairness”, being violated during Henrietta’s care and the consequences her family must now face.

Dr. Gey’s actions to distribute HeLa already violated Henrietta’s, alongside her family’s, autonomy. Her cells were taken without her true, informed consent. This made the audience already question Dr. Gey’s moral thinking. However, during this second part, Skloot paints a very different picture of him. She makes him the “hero” by not saying and or mentioning Henrietta in interviews. From my point of view, this is immoral justice for Henrietta and her family. The “justice as fairness” policy is being violated; they must suffer from poverty when they have an opportunity to gain profit, yet that opportunity is unattainable (without true mention of Henrietta till twenty years later). Furthermore, after the death of Henrietta, the importance of her family’s autonomy increased when Dr. Gey wanted to perform an autopsy and needed her husband’s consent. Yet, Day, her husband, did not even know of what Johns Hopkins wanted. Due to Dr. Gey’s and Johns Hopkins’s mishaps, their action to not include Henrietta Lacks with HeLa is not morally valid. 

Henrietta Lacks and the Question of General Ownership

In section two of The Immortal Life of Henrietta Lacks by Rebecca Skloot, Skloot investigates and scrutinizes the intersection of personal and scientific ‘ownership’ and the somewhat ironic repercussions that the HeLa situation has had on the scientific community vs. Henrietta’s family.  To explore the ethical question of scientific ownership, I will focus mainly on Dr. Charles Pomerat’s classification of HeLa cells as “general scientific property”, and how this designation has impacted-and could continue to impact- both the scientific world and patients/their families.

In Part Two, Skloot quotes Dr. Charles Pomerat on page 104 as saying that Gey should have finished his own HeLa research before “Releasing HeLa to the general public since once released, it becomes general scientific property” (p.104). Unsurprisingly, this immediately raises questions about this concept. A quick search defines this term as “[a community’s] absolute ownership, usually of personal property, with the right of complete dominion over it”. In HeLa’s case, this right of complete dominion was used to allow doctors to buy, sell, and perform millions of tests on reproduced HeLa cells. This leads us to the unavoidable question of ownership. In Henrietta’s case, the cells were not considered to be “hers” once they were removed- they instead became a general experimentation asset to the medical community. In other words, the tissue that used to be intertwined with Henrietta was removed and became, instead, a separate ‘thing’ that was considered completely separate from the person from whom it was taken. This new object is now the property of the medical community and any benefit or profit made from it does not benefit the patient or in this case, the family of Henrietta (as she passed away.” This is a dangerous precedent to set, in my opinion, because it sacrifices the informed consent and personal ownership of one person for the “general good” of a community. However, once this vague precedent is set, the community which benefits would often do so at the expense of others.

This complete separation of the HeLa cells from the Lacks family immediately presents itself as an ethical issue, especially when you compare the massive, profitable impact HeLa had on the biomedical field and the world as a whole. The book repeatedly mentions the massive industries born from Henrietta’s cells, notably cell culturing centers, which now reap millions in sales and exert large influences over scientific fields. However, at the same time that HeLa was starting this, Lacks family relatives were dying of TB and other preventable illnesses because of inadequate healthcare. Examining this through Utilitarianism, it, at first glance, seems justifiable: it produces the most happiness for the most people. However, the lack of respect and ownership given to Henrietta and her family complies with a dangerous double standard: the benefit of one community (science) is more valuable than the utility of another (Lacks and other African-American patients at the time). One must realize that by only looking at the utility gained by the medical community and the potential people their HeLa research could help, they are overlooking and ignoring the underlying issue of inadequate moral respect, communication, and access to proper care for the Lacks and other families.

HeLa vs. Henrietta Lacks: a Disregard for and Objectification of Medical Subjects

In Part II of The Immortal Life of Henrietta Lacks, Skloot delves deeper into the sharp contrast between the life of HeLa cells and that of Henrietta and her family. While HeLa cells lived a flourishing life and legacy far beyond Henrietta’s own, Henrietta and her family faced numerous healthcare struggles that only seem more unethical in light of their initial ownership of Henrietta’s scientifically renowned biological material. After Henrietta’s death, Henrietta’s family consented to an autopsy, but both Henrietta and her family were never informed of the removal of her cancer cells for medical research. Even after HeLa cells made huge strides in the medical world and people from all over came to interview Henrietta’s family, Henrietta’s family still had little information about what HeLa cells were actually being used for. On top of this withholding of information, Henrietta’s family constantly struggled to afford much needed healthcare, which was unfortunately ironic considering the impact of HeLa cells. 

I think that this distinct contrast results from what can essentially be boiled down to the perception of colored people at the time as merely a means to an end for selfish, and often economic, motivations. This view of Henrietta’s biological material as a transactional item, especially as it became more and more widespread in the scientific community, diminished Henrietta’s worth as a human, which Gey’s assistant Mary actually points out with her observation of the chipped red polish on Henrietta’s toenails — “I thought, Oh jeez, she’s a real person.” It’s evident that this objectifying of patients, especially colored people, for medical research wasn’t uncommon, as Sonny tells Skloot “John Hopkins was known for experimentin on black folks. They’d snatch em off the street…”

With this in mind, so many other actions of the people involved with HeLa cells become contentious. For instance, Gey’s claim of protection of privacy for Henrietta and her family is greatly undermined by his failure to receive informed consent in the first place and also the lack of compensation to Henrietta’s family. This puts into question: when Gey claimed to protect Henrietta’s privacy, was he honest or was it more about claiming ownership over HeLa cells by not recognizing Henrietta’s contribution? Is it ever ethical for anyone to claim ownership over someone’s biological material other than that someone and perhaps his or her family? And finally, to what extent can utilitarianism justify these members of the scientific community’s actions?