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In The Immortal Life of Henrietta Lacks, Skloot describes her joint quest with Henrietta’s daughter, Deborah, to research and tell Henrietta Lacks’s story in a way that fully wrestles with the injustices done to the Lacks family in the name of scientific progress. Throughout the book, Skloot alternates between Deborah’s story, the story of Henrietta’s life, and the story of how HeLa cells revolutionized medicine. By looking at how these three stories interact, Skloot paints a picture of the structural inequalities that lead to the Lacks family being victims of scientists and journalists alike.
In Part 1 (Life), Skloot alternates between what little she has been able to piece together about Henrietta Lacks’s life with the story of Dr. George Gey, a pioneer in the field of tissue culturing. Throughout this section, it becomes clear that the historical and personal conditions created a perfect storm for the traumatic events the Lacks family would soon experience. Skloot explains how researchers considered taking samples from public ward patients acceptable because they considered the samples as almost a kind of payment for their treatment. Furthermore, it was uncommon for patients, particularly poor, Black patients to question doctors because they were considered authority figures. This toxic storm of factors meant that not only did Henrietta’s doctors take a tissue sample from her cervical cancer, but she also lacked the knowledge to consent or question what they were doing. Furthermore, neither she nor her family understood her condition or treatment.
In Part 2 (Death), Skloot alternates describing her early attempts at earning the Lacks family’s trust with the immediate aftermath of Henrietta’s death. Skloot highlights not only the poverty of the Lacks family but also their deep fear of doctors both from the United States’s history of medical racism and from the way Henrietta’s cells were taken from her. She emphasizes that the Lacks family’s fears are entirely based on real events, such as how white doctors in the Antebellum south used to conduct research and drug trials on enslaved Black people. Meanwhile, Skloot describes how growing up without her mother left Deborah vulnerable to a predator in the family’s orbit, leading her to marry young. One of her brothers, Zakariyya, ends up in jail for murder. While HeLa cells led to new discoveries, her family, not even knowing about the cell biopsy, struggle in poverty. Although scientists consider that perhaps when Henrietta’s name is revealed to the world she will get the “fame she richly deserves,” the book makes it clear that resources and respect, not fame, are what the Lacks family actually needed.
Part 3 (Immortality), dives deep into how both Henrietta’s cells and fame have become immortal. Instead of comfort, the result of both the media storm and medical research for the Lacks family is severe mental and emotional harm. The section begins with two terrible violations. First, in an attempt to mitigate the damage done by the overgrowth of HeLa cells, researcher Viktor McKusick sends his research intern Susan Hsu to take blood from Henrietta’s children. Because of language barriers between Hsu and Day, the Lacks family are unable to give informed consent to the blood draw and believe they are being tested for cancer. Not long after, a journalist named Michael Gold publishes Henrietta’s medical records in an article he writes about HeLa cells. His work not only violates the Lacks family’s privacy, but it also results in them learning information about Henrietta through the media.
In contrast, Skloot’s willingness to bring Deborah along for her research builds trust between the two of them and allows for Deborah to slowly begin to understand her mother’s story. Skloot brings Deborah and her brother Zakariyya to meet with Dr. Lengauer, whose patient explanations and willingness to admit wrong on the part of John Hopkins leads to a moment of catharsis and healing. Next, Deborah and Skloot seek out the truth about what happened to Deborah’s sister Elsie, who had been left at a hospital for the insane. After learning about how terribly Elsie suffered, Deborah slips into an almost manic state. Despite Deborah’s anguish, she chooses this moment to allow Skloot to look at Henrietta’s medical records at long last, cementing her willingness to let Rebecca tell Henrietta’s story. However, Deborah’s unsettled state continues into their return to Lacks Town. Gary, seeing Deborah’s dangerous agitation, performs a soul-cleansing ceremony on her, during which he takes the burden from Deborah and gives it to Skloot. This ceremony serves as the climax of the book, in which Deborah unburdens herself from the pain of Henrietta’s legacy, and Skloot takes on the responsibility of telling it correctly, centering Deborah’s voice.
