MISCOMMUNICATION AND SOCIETAL INTRIGUE IN THE IMMORTAL LIFE OF HENRIETTA LACKS Thomas King
Bergen County Academies
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
Scholarly Essay
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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