Miscommunication and Social Intrigue in The Immortal Life of Henrietta Lacks

MISCOMMUNICATION AND SOCIETAL INTRIGUE IN THE IMMORTAL LIFE OF HENRIETTA LACKS

Thomas King

Bergen County Academies Scholarly Essay

Rebecca Skloot’s creative nonfiction work The Immortal Life of Henrietta Lacks is an ominous reminder of how proper communication between patients and healthcare providers has proven to be inconsistent at best in modern history. In the book, Skloot investigates the life and legacy of Henrietta Lacks, a black woman who died of cervical cancer in 1952. Cancer cells were harvested without her permission and continued to multiply after they were separated from her body. Unbeknownst to her family, an entire industry was created out of growing and selling her cells to researchers. Miscommunication is a recurring motif in the book with members of the medical community failing to provide full explanations of patient circumstances–sometimes with nefarious intentions and sometimes with benevolent intentions. However, sometimes doctors simply fail to understand the minimal extent of the Lacks’ education: a byproduct of their social circumstances and a huge contributor to the events in the Lacks’ story. Skloot suggests that this education gap is part of a larger issue deserving the attention of the general public.

Skloot indicates that even before Henrietta Lacks died, there was a precedent of deliberate miscommunication between medical providers and black test subjects in American history. The book cites the Tuskegee Syphilis Study as an example of medical researchers specifically deceiving their test subjects to encourage participation in the study. The Tuskegee Syphilis Study was an experiment by the US Public Health Service which examined the effect of Syphilis on black men. The subjects were not informed of their ailments nor were they informed of treatment options after a cure was discovered (Skloot 40). The researchers intentionally did not communicate the full extent of the study to ensure the subjects would remain in the program. Skloot, therefore, explores a nefarious flavor of miscommunication between the medical community and black research subjects which took place years before Henrietta Lacks develops cervical cancer. Skloot’s establishment of the precedent of intentional miscommunication helps to explain why Henrietta was hesitant to see the doctor at Johns Hopkins and suggests a more systemic flaw in the medical system.

However, later in the book, Skloot explores instances of miscommunication between medical researchers and the Lacks family which are less intentional. A prime example of an unintentional failure of medical professionals to communicate with their test subjects comes in the form of Dr. McKusick and Dr. Hsu. Looking to identify HeLa cell contamination amongst other cell cultures, geneticist Dr. McKusick instructs PhD research fellow Dr. Hsu to collect blood from Henrietta Lacks’ descendants (Skloot 132). Dr. Hsu calls Henrietta’s husband–Day–asking for his permission to draw blood from his children to learn about the HeLa genotype. However, Day misunderstands the purpose of drawing blood–instead assuming it is a test for his children’s susceptibility for cancer. Meanwhile, Hsu incorrectly gathers that the Lackses are completely aware of their mother’s “contribution” to cell biology and understand why Hsu is taking blood. Day completely misinterprets Hsu’s intentions despite giving consent for the study. Skloot attributes this miscommunication to Day’s lack of education as well as Day and Hsu’s respectively unfamiliar accents (Skloot 132). Even though Hsu tries her best to explain the situation, she completely overestimates Day’s knowledge of cellular biology and the ubiquity of HeLa cells in research (Skloot 132-133). Unlike Southam or the Tuskegee researchers, Dr. Hsub does not believe she is violating her subjects. She is simply doing her job as a researcher with no ill intentions for the family. Later in the chronology, Henrietta’s daughter Deborah has an appointment with Dr. McKusick to give blood when she asks him about her mother’s cancer and the role of HeLa cells in medical research. Eager to help her understand the situation, McKusick gives her a medical genetics textbook which is far beyond her level of biological understanding (Skloot 136). Again, McKusick has the intention of helping Deborah, but nonetheless completely fails to communicate the details of her mother’s cells and their role in the scientific community. Skloot demonstrates that these researchers both fail to communicate with their research subjects not through ill intent, but through their inability to understand the perspective of their subjects.

However, she also makes clear that these instances of miscommunication are in large part due to the lack of education in the Lacks family. David Lacks left school after fourth grade, and Henrietta Lacks left after sixth (Skloot 18). Deborah was able to finish high school, but when she tried taking community college courses as an adult, it was revealed that her high school curriculum was insufficient for college (Skloot 219). Skloot attributes the lack of education in the Lacks family to external circumstances

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which expand far beyond the scope of just Henrietta’s family. Henrietta and David were forced to quit school to help their agrarian family make a living (Skloot 18). The Lackses are extremely poor, and the distinction between the social status of the black Lackses and their white counterparts is stark. Skloot states:

On one side of the two-lane road from downtown, there were vast, well-manicured rolling hills, acres and acres of wide-open property with horses, a small pond, a well-kept house set back from the road, a minivan, and a white picket fence. Directly across the street stood a small one-room shack about seven feet wide and twelve feet long; it was made of unpainted wood, with large gaps between the wallboards where vines and weeds grew… Slave-era cabins sat next to cinder-block homes and trailers, some with satellite dishes and porch swings, others rusted and half buried. (Skloot 61) Skloot spends several paragraphs describing the literal have and have-nots of the two neighborhoods–not just Henrietta’s immediate family, and the use of the adjective “slave-era” to describe the Lacks’ homes is certainly intentional - alluding to the initial cause of this disparity (61). This part of the book is perhaps where Skloot maximizes the benefits of writing in the genre of creative nonfiction: she explains the story of Henrietta Lacks but also allows herself the creative freedom to explore relevant but ostensibly distant social concerns in her story. She also uses more subjective but nonetheless powerful language to support the notion that the Lacks’ social circumstances also impacted their relationship with medical treatment. Johns Hopkins was the only hospital near the Lackses which treated black patients, and it was over 20 miles away (Skloot 15). Most black patients, including Henrietta, visited the hospital only as a “last resort” (Skloot 16). Skloot further explains that this poverty was part of the reason black patients were recruited for dangerous studies: many were “desperate” for resources like food stamps or transportation to their employment (40). Skloot tries to convey that the circumstances of Henrietta’s death and her family’s long-term struggles are not unique to the her immediate family. She makes a point of describing the entire neighborhood of the Lacks town - not just Henrietta’s childhood home. She also purposely mentions that Henrietta’s apprehension to see a doctor was common amongst black Americans–not just a personal apprehension. Skloot may be pointing to a larger societal issue in the book, indicating that the circumstances which led to her cancer treatment, the cells being used without her permission, and her family’s turbulent relationship with medical professionals are not unique to Henrietta Lacks’ family. This is not implausible considering that Skloot does talk at length in the afterword about other groups of patients from around the world of which their organs were used for medical research nonconsensually–drawing attention to a larger, systemic issue that needs to be addressed. Skloot also states, “The History of Henrietta Lacks and the Hela cells raises important issues regarding science, ethics, race, and class; I’ve done my best to present them clearly within the narrative of the Lacks story…” (xiv) - implying that she is aware that her book calls attention to broader societal issues. Skloot is calling attention to the gap of social, especially educational opportunities, between balck and white Americans in the local Baltimore area where Henrietta Lacks raised her family and in the rural Virginia town where she grew up. As Skloot confirms, opportunity gaps in these places still persist, and if the Lackses had been given more educational opportunities and more accessible healthcare, the story of Henrietta Lacks and her family would have been far different.

The Lacks’ social circumstances are a core element of the story of HeLa. The miscommunication that resulted from their being denied of educational opportunities created a large gap in the story of Henrietta Lacks for decades until The Immortal Life of Henrietta Lacks was published. The book ends with a sense of cautious optimism for the family: the afterword states that a scholarly fund was created to help the next generation of the family gain financ i a l stability with the help of the book’s publisher. But the problems inherent to some of the health care and educational systems discussed in the book still persist in the United States, and Skloot makes no attempt to hide that fact.

Works Cited

Skloot, Rebecca. The Immortal Life of Henrietta Lacks. Broadway Books, 2017.

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