An analysis of Part III: The Immortal Life of Henrietta Lacks

In the third part of “The Immortal Life of Henrietta Lacks”, Skloot works with Henrietta Lack’s family to find out what really happened with the HeLa cells. As in the first two parts, abuse of power and informed consent, as well as racism plays prevalent roles in the story.

While it is obviously highly immoral at the individual level for a doctor to violate laws of informed consent and essentially steal property through the loophole of fine print on a legal document, I think that this issue is an overall systemic problem. Moore v Regents of the University of California is a prime example of where priorities lie for not only the doctors but also the American Government. John Moore, a patient who had his spleen removed, unknowingly signed his right to his cells away on a consent form. Due to the cells high antibody count it was extremely coveted by scientists and the patent to the cells sold for billions of dollars. When Moore took it to court, even knowing the cells were obtained through violation of informed consent, the court sided with the scientists ruling that once a cell is taken from the body it is no longer that individual’s property. The courts had one motivation: prevent de-motivation of researchers and companies, as well as maintain continued scientific discovery. As this example points out, the government cares more about monetary gain then the individual rights of its citizens.

Monetary gain over the wellbeing of society is again highlighted by the continued poverty of the Lacks family. The HeLa cells brought large monetary gain to multiple corporations, however Deborah who had significant health issues was unable to receive reliable medical treatment even though it was her mother’s cells that have brought wealth and scientific achievement to those who could help her. The fact that it took so many years for the Lacks to find out what was going on with Henrietta’s cells shows just how little the doctors care about Henrietta or her family past what they can do to maintain their research goals. The family was not contacted until they were asking for blood samples to fix the “contamination problem”, nor did the scientists care to have more information on Henrietta or her family past what it could do to make their research articles on HeLa have more “character”. With it so engrained in our society, will we ever be able to reform the blatant disregard of racism and human rights by our society in pursuit of monetary gain?

Part 3 Skloot

Part III of the book periodically broadens its scope beyond Henrietta’s case to include other controversial instances of scientific testing and the commercialization of results. In particular, Skloot talks about the 1984 case Moore vs. Regents of University of California, which involved patents awarded on a cell line derived from the plaintiff, John Moore. This case addressed two interesting issues that have arisen throughout the book. First, to what extent can we own biological material and its products; second, are we entitled to compensation for or control over the use of our own biological material.

 Just as in Henrietta’s case, Moore was not informed that his tissue was being experimented on nor that it would be shared with other researchers or put to any use other than his own personal treatment. In fact, he seems to have been told by the physician Golde that it would not be used in any work of commercial value, even though Golde later patented the cell line and entered into an agreement with a biotechnology company to develop marketable products from it. The first question here whether the biological entity — the cell line — could be “owned” at all. Normally, US patent law states that naturally occurring biological entities cannot be owned for the purposes of patent protection. However, the Supreme Court case Diamond v. Chakrabarty determined that biological entities that are not naturally occurring and “only existed because they had been altered using ‘human ingenuity’” could be patentable inventions, referring in this case to a genetically engineered strain of bacteria that was unique in its ability to consume petroleum waste. Similarly, since cell lines must be cultivated through complex procedures and do not occur naturally outside the body, they can be patented as new and useful inventions, according to the Moore case. As a consequence, the doctor who developed Moore’s cell line held property rights in the line that he could sell for profit. 

The other question in Moore was whether the original human source for the tissue also possessed property rights in it.  Certainly, tissue that is part of a person’s body is her possession, but once it leaves the body, the issue becomes more difficult. The California Supreme Court ultimately ruled against Moore, and stated that although the doctor was wrong not to inform Moore of the university’s intentions, Moore still did not have any ownership in his tissue after it left his body. 

Skloot tells us that this remains the law since no legislation has since adjusted these criteria. Clear requirements of informed consent or disclosure of future use have not been established, and the failure to do so does not undermine a research team’s patent rights of a. Interestingly, in the afterword, Skloot points out another patent case that seems to be slightly different from Moore and Chakrabarty. She mentions a lawsuit brought in the year she published the book (2009), against Myriad Genetics, which possessed the patent on two genes crucial to breast and ovarian cancer diagnosis. Skloot points out that these patents have given Myriad a monopoly on genetic testing for these genes that has artificially inflated the prices and inhibited outside research and the advancement of competing analyses. This would seem to violate the  medical researcher’s ethical responsibility to facilitate the possible treatment for patients. 

Interestingly in 2013, the Supreme Court decided against Myriad (see below link), though not because of the ethical concerns above. Instead the Court found that unlike the bacteria in Chakrabarty, the DNA sequences isolated by Myriad were not patentable inventions because they had not been altered using human ingenuity. The sequences were identical to those that could be found in a human chromosome in nature and were not altered as a consequence of being isolated from the rest of the DNA on the chromosome. It’s would be interesting to see what impact this decision might have on cases like Henrietta’s; it removes one type of biological entity from patent protection but seems to very much recognize other rights, like those in a cell line. Also it didn’t seem to address any of the ethical and public policy issues that are so relevant to Skloot’s book. For those who might seek real long term reform in this area, the courts don’t seem to offer a tremendous amount of hope even though Myriad had a relatively positive outcome. Might the attention that seems to be growing for these issues eventually lead to further regulation by Congress on the questions of ownership and consent? 

Third and Final Part of the Immortal Life of Henrietta Lacks

Both the ending of the Immortal Life of Henrietta Lacks, and the actual act of finishing this novel was bittersweet. The third section, “Immortality,” importantly demonstrates Deborah Lacks’s personality, personal suffering, and resolute love towards her mother and sister. I appreciate this third part most, because readers are finally able to deeply understand the perspective of the Lacks family, rather than just snippets from accounts with doctors, scientists, or others who harassed the family. Rather than judge troubled characters, such as Zakariyya, the events in Part 3 foster a sense of empathy. I was emotionally stricken by the effects of trauma that the family has faced from HeLa, particularly Deborah, and how it motivates her to learn more about Henrietta and Elsie.

I immediately think about current social issues in cases of Deborah’s direct and indirect distrust towards white authority. It’s heartbreaking, and comes off almost childlike when Deborah repeats herself and changes her mind constantly about Rebecca. Once the reader is able to understand where these intrinsic fears come from, in this case “Sir Lord Keenan Kester Cofield,” it’s clear to the reader that this is just a human response to all she has been through; she isn’t inherently flawed. This serves white readers an important reminder of the trust we have in institutions/authority that many do not. Modern society hasn’t escaped the injustices that were apparent decades ago.

Many actions display Deborah’s strong character: her will and determination to go to school as an older woman, her focus on honoring her mother and sister rather than simply working for financial gain, and her obvious broken physical health that she pushes aside to continue finding information. Another passage from the novel that I found very interesting was Gary and Deborah’s interaction, and the way faith played into the rest of the book. As someone who is nonreligious but respects religious people, I was fascinated by the immensely powerful effect faith had on Deborah’s mental state, and sense of comfort it gave her. I wonder, would Deborah have survived her many strokes/health issues had faith not been a part of her life?

Rebecca Skloot may have instigated some of the mental stress that Deborah faced, but overall their bond was beautiful. Skloot served as one of the first outside, stable listeners in Deborah’s life which was so desperately needed. If Skloot didn’t exist, how would Deborah’s life have been different? Although I deeply wish Deborah had received better care and compensation for her mother’s ordeal, I find peace in the fact she died happily around people who loved her.

HeLa, Mo, and Physician Incentives

In part three of The Immortal Life of Henrietta Lacks one of the pertinent ethical problems exemplified through events in the book is the problem of ownership and commercialization of biological material. Henrietta’s family comes to find out that their mother’s/wife’s/sister’s cells are being sold for $25 a vial and thus were making a very large profit for those selling them. However, the Lacks’ had not seen any form of compensation from the profits of Henrietta’s cells and struggled to even afford medical insurance to seek care for themselves. In addition to this, Skloot explains the story of the Mo cell line in which John Moore’s spleen cells were taken by his doctor and sold to biomedical companies, without his consent, to result in an industry worth $3.5 billion. Moore sued his doctor for lack of informed consent and stealing his cells, but ultimately the case was dismissed with the Supreme Court of California declaring that once your tissues are out of your body, they are not yours. In addition, they were now deemed an “inventive effort” due to the fact that Moore’s doctor had “transformed” them through his research. 

In both of these examples, there is a very blatant and clear violation of Kantian autonomy principles which state that the demands of treating people as autonomous will dictate the extent to which you can treat people as means. The doctors have been placed in a position of power over patients and research subjects, and have taken advantage of their privilege to exploit the people they are supposed to be helping and instead used their cells for financial gain. Both Henrietta and John did not have the power to determine what happened with their cells, but instead had to yield the doctors decisions who were really supposed to be caregivers to their patients, not business people. They were used as means and not ends in and of themselves, and their stories serve to highlight the inherent inequalities that arise between people’s statuses as either patient or physician.This leads me to question, can a doctor ever be entirely invested in seeking to help their patients in the most beneficial way if they also have coinciding monetary, research, or career incentives to treat, cure, or operate in a certain way?

Henrietta Lacks, Part 3

In the final part of The Immortal Life of Henrietta Lacks, Rebecca Skloot details the Lacks’ revelation that their mother’s cells had been harvested without consent. This comes several decades after the initial procedure and as a complete surprise and shock to the family. The Lacks, who largely remained uneducated, were confused as to how the cells lived years after their mother’s death. In pursuit of answers, we follow Deborah on her journey to piece together her mother’s history with help from the author herself. Together, they learn about the paternalistic medical culture of the 50s that Henrietta entered, the explicit racism that compounded many of her problems, the multibillion-dollar industry that arose from HeLa cells, and, more personally to the family, the fate of the eldest sister, Elsie.

Throughout this section, it is clear that the family lives in the irony of their mother’s “contribution” to healthcare and their socioeconomic status. This is perhaps best epitomized when Deborah says on page 256 that “I would like some health insurance so I don’t have to pay all that money every month for drugs my mother cells probably helped make.” This family has experienced one of the most well-documented instances of medical exploitation, and yet the lack of compensation for this injustice has trapped them in a cycle of poverty wherein they cannot afford healthcare. In essence, Deborah, Henrietta, and the entire Lacks’ family are victimized by the same system decades apart.  

However, it is noteworthy that the only professionals to ever acknowledge the injustice of this victimization are the international researchers, such as Christoph Lengauer. The Australian researcher opened his lab to the family and was the first professional to take the time to explain HeLa to the Lacks. Despite being a white scientist at Johns Hopkins, the very group that had started the Lacks’ plight, he was able to say “Hopkins pretty much screwed up”, with no qualms. To me, this indicates the problem lays within the culture of American medical practice and research. There is something fundamentally paternalistic in how we train our scientists and it encourages the separation of a patient from their treatment. Whether this stems from elitism, racism, sexism, or other bias is up for debate, but these were all undeniably evident throughout the novel and definitely contributed to the tough situations faced by the Lacks. As these seem to be fundamental qualities of our culture, I feel we are destined to live in a cycle of paternalism where the most vulnerable populations receive the worst health outcomes. For me, the only solution would be to adopt a more socialized version of healthcare. This would allow a family like the Lacks to break the cycle of poor health without weighing their financial limitations. However, given the current American political climate, I doubt this would ever happen. Thus, I wonder if anyone has a proposal that could circumvent such a measure while achieving the same goals? 

Saving patients and selling cells.

In the third chapter of the book “The immortal life of Henrietta Lacks” Skloot explores the events that occur in the medical field regarding HeLa cells advancement, as well as the conflicts that arise due to the researchers and journalists that attempt to profit off from Henrietta Lack’s cells without having any respect for Henrietta Lacks as a person or giving their family any rightful compensation.

The way in which doctors attempt to declare HeLa cells as their own species, or the way David Golde attempted to make profit off of John Moore, the patient, by using the cell he extracted from the patient without consent and patent it to generate billions of dollars all showcase the tendency of doctors to regard the cells of patients as a separate entity from the patient, and ignore the necessary consent needed in order to uphold the patient’s autonomy and right to his or her own cells.

Essentially, it could be argued that the doctor’s actions of prioritizing their personal profit over the patient’s welfare and wellbeing as well as their basic moral rights. The obvious assumption in this case is that the extraction of patient’s cells, or any other body part without their informed consent is inherently immoral.

However, if the patients were to be informed that the cells they possess have great potential benefit to the medical field, whether or not the patient is morally obligated to use the cells in order to contribute to the medical field and potentially save millions of lives.

This scenario could be compared to a situation in which a person sees another drowning person. Are they obligated to save their lives? Depending on the answer to this question, patients ought to have a moral obligation to use their cells in order to contribute to the medical field.

Lets then assume that the person decided to use his/her cells in order to generate a life saving vaccine or medicine. Then we would have to consider whether the wealth or money generated using the cell ought to be given to the patient. In a strictly Kantian perspective, since the cell has been originated from the person, it is intuitive that the person should be rewarded for the benefits that the cell created in society.

However, we need to consider whether an individual who only possesses the cell would be able to do the necessary research in order to develop such medicine. In a utilitarian perspective, in order to maximize the benefit that the cell has on people in the society, it would be most efficient that doctors, who have the necessary skills and knowledge that is needed to develop such medicine and be profited off from it, as in a free market economy, and due to the profit maximizing nature of human, the profit that returns to those specialized doctors is what would enable the development of the medical industry in the first place.

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.