Category Archives: The Immortal Life of Henrietta Lacks III

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.