The Immortal Life of Henrietta Lacks

Nonfiction | Biography | Adult | Published in 2010

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Themes

Scientific Ethics and Informed Consent

The central theme of the book is scientific ethics and informed consent. Before surgery to remove her tumor, Henrietta signed a consent form allowing the doctors to “perform any operative procedures […] that they may deem necessary” (31). After her death, her husband signed an autopsy permission form, having been told that the doctors will run tests that may one day help his children. Yet, despite having given official and legal consent, neither Henrietta nor her husband had any idea of what they were agreeing to or what the consequences would be. Their incomprehension mirrors the Moore case, as the judge in that case ruled that Moore’s doctor should have disclosed his financial interests.

Henrietta’s family knew nothing about HeLa until decades after her death, and they are extremely angry that they were not told. Some family members also feel that they should receive financial compensation, as the research community profited from Henrietta’s cells. This theme questions whether the Lacks family has a moral or legal right to claim ownership of Henrietta’s cells, and whether our body parts and tissues cease to belong to us after they have been removed from our body, as the Supreme Court of California ruled in Moore’s case. The doctors were freely allowed to remove tissues from Henrietta’s body without her knowledge or consent while she was still alive, arguably when she should have most the ownership of her body, yet the doctors needed consent to perform an autopsy on her and collect tissue samples after her death. These contradictions from the scientific community run rampant throughout the book, due in part to the rapid advancement of research with few ethical statutes in place.

While it was first George Gey who took advantage of the lack of ethical monitoring in contemporary research, the ethical debacle continued long after he lost control of the HeLa cells. In the mid-1950s and 1960s, Chester Southam injected Henrietta’s cancer cells into the skin of prisoners and cancer patients without their informed consent and was merely given a year of probation; he continued to practice until 1979. The legal cases in the book contend that, at the time, there were few consequences for doctors who behaved unethically in the name of medical research. Though Day’s latest blood samples were given before the institution of a law that requires the IR B’s approval of consent, the fact that such a law came to fruition suggests that the medical research community will finally be monitored.

Racism in the Medical Community

The theme of racism, and its significance in Henrietta’s story, is evident from the earliest chapters. Skloot hints at the dark shadows in American history when she tells us about Henrietta’s childhood in the 1920s and 1930s; Henrietta’s extended family in Clover, Virginia still worked on the tobacco farms where their ancestors had lived as slaves. When Henrietta and her cousins accompany their grandfather to the tobacco market, black farmers are treated like animals, while white farmers stay in comfortable accommodation.

Several decades later, there is little sign of progress. When Henrietta becomes sick in the 1950s, it is clear that black and white patients do not have equal treatment. She must travel to John Hopkins hospital, the only hospital in her area that treats black patients. Even there, she was confined to “colored only” wards. In Chapter 8, Skloot cites research which shows that, although doctors claimed to give black and white patients the same treatment, for black patients, the treatment was often delayed.

While the theme of scientific ethics is extremely wide-ranging, there is evidence to show that it was usually poor black patients who were used for research without their knowledge or consent. In Chapter 3, Skloot informs us that in the 1950s it was the norm for doctors to use patients from public wards for research, believing that giving free treatment entitled them to take something in return. Many of these poor patients were black and, in a society that was still segregated, they had few legal rights and could therefore be exploited: “This was 1951 in Baltimore, segregation was law, and it was understood that black people didn’t question white people’s professional judgment” (63).

One of the most extreme examples cited by Skloot is the Tuskegee syphilis studies—black American men with syphilis were left to die, even after effective treatments were discovered, so that scientists could study the progress of the disease. Another horrifying example is the story of Alexis Carrel, who wanted his research on organ transplantation and life extension to be used only for the benefit of educated whites. Carrel later openly praised Hitler for his attempts to eliminate “inferior” races. Elsie’s photo and the information provided suggest that her treatment at the Hospital for the Negro Insane was similarly brutal; she was likely the subject of experimentation, causing her early death at the age of 15. Skloot’s exhaustive research and anecdotal evidence make it clear that the medical establishment at the time was more likely to take advantage of African Americans than attempt to heal them.

Racism and Cycles of Poverty and Abuse

The book makes a clear link between poverty and race. All the black characters live in poverty, from Henrietta’s childhood in the 1920s and 1930s through to the present day, when Skloot meets many different members of the Lacks family for her research. In terms of both poverty and racism, there is a strong indication that parts of American society are still struggling to move forward.

When Skloot visits Clover, Virginia, in 1999 and meets Henrietta’s cousins, Cootie and Cliff, the deprivation in which they live is shocking. Meanwhile, Deborah and her brothers also struggle to make ends meet and cannot afford health insurance. Most of the family members suffer from serious, long-term health problems—heart problems (Sonny); arthritis, osteoporosis, nerve deafness and depression (Deborah); high blood pressure and diabetes (the whole family)—but they lack adequate medical care: “Some were covered through Medicare, others on and off by spouses, but they all went stretches with no coverage or money for treatment” (168). This struggle to survive is a significant factor in the family’s distress and anger over HeLa, as Lawrence says: “Hopkins say they gave them cells away […] but they made millions! It’s not fair! [Henrietta is] the most important person in the world and her family living in poverty. If our mother so important to science, why can’t we get health insurance?” (168).

The family is overwhelmed by the feeling that they have been exploited and mistreated by the higher echelons of society; as a poor black family, they have felt powerless to express their views and assert their rights and wishes. The Lacks’s struggle for healthcare mirrors the medical community’s exploitation of blacks. Even when African Americans were supposedly getting healthcare, as in the case of Henrietta, it was often mediocre care or outright experimentation.

Because of a lack of connection with the legal system, and a perpetual poverty that presents no avenue for escape, abuse and neglect are prevalent issues in the Lacks family. Day neglects his children and leaves them to the care of his cousins, who then physically abuse them. Galen sexually abuses Deborah, and Day turns a blind eye. Deborah later unknowingly perpetuates the cycle by becoming pregnant early, as her mother did, and marrying an abusive husband. Altogether, the Lacks’s race, poverty, and familial circumstances have hindered their societal progress.